Living with Lewy Body ebook

2008-05-21T11:51:00.009-05:00

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A journey through caring for a loved one with Dementia

In Memory of Douglas Wilford Cotton
January 13, 1924 - May 9, 2008

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Letters

2008-05-20T23:30:00.000-05:00

I recently came across your blog during one of my many desperate searches for information about Lewy, our best friend and enemy.

While I haven't read every entry yet, what I have sifted through has made me sigh out loud in complete relief. Though logic (and all the people at the Alzheimer's support group) tell me I am not alone, it sure feels like it sometimes. Reading experiences that could be my own from someone whose loved one actually has Lewy Body and not some offshoot of another form of dementia is invaluable, and I wanted to say THANK YOU so much for taking the time to put your daily trials where I could find them.

If I can possibly make a long story short, my Dad has Lewy. For as long as I can remember, he had those vivid dreams/night terrors and punched holes in walls. But after it was just him and my Mom at home, she'd tell me about his strange behavior and "visitors" at night...he'd chase kids, animals, men with weapons, and use the clothes dryer as a toilet. When she passed away, I brought him into my home, but because I was fresh out of cancer surgery/radiation myself and had two small children to boot (and life in general), we eventually found him a place of his own, which proved disastrous. We brought him back into our home. But after weeks of chasing "Lewy" around at all hours, re-arranging furniture and chasing naked, peeing Lewy, and naked exercising Lewy around the house, we realized he needed round the clock care that I definitely could not provide for him. 3 facilities later (had to move him after finding evidence of neglect and abuse), I am confident he is finally being well cared for. Deep breath!

Of course there are a million other things in between as you clearly well know.
But again, thank you thank you thank you...I will be faithfully reading whenever I can.

All my best to you and your family,

Laine

1 comments:

Stella said...
Oh laine, bless you. Yes, you know LBD. You describe what my life would have been like if it were not for the blindness. I feel awful for being thankful for the blindness which kept Freddie confined to close quarters instead of blasting all through the house and yard. I'm glad you have found a safe place and good people to care for your dad. It takes special inner strength to look after a Lewy. If you have found folks like that, it is a wonderful miracle.

Letters

2008-05-20T22:01:00.000-05:00

Hey Pauline,

Sounds like you have your own brand of "air pollution" going on with Lewy!
I know how bad it can get. During my mom's last couple of weeks all her waste of all kinds were rank beyond description. Sometimes I thought we would have to evacuate the building, or call a haz mat team! It's not everybody that can clean up this kind of "pollution!"

I took it to mean that nothing in her body was functioning properly anymore, and that organs were out of balance and were slowly shutting down. Lewy's kidneys might well be failing, one day at a time.

Thank goodness it is spring and you can throw all the windows open and run the fans! Those odors are extremely persistent, but at least all this helps!

Get out of the house at every opportunity and breath some fresh clean air and smell every nice spring flower you can find! These situations do give us an entirely new appreciation for breathable air! (You might consider going to an army surplus store and buying a gas mask! Who would Lewy think you were if he saw you in one of those???)

Love you,
Patty :)

Letters

2008-05-20T21:55:00.000-05:00

Hi Pauline,

It's Monday again, another new week. I'm sure Lewy doesn't know the difference, but every day is a long one for you, even if you're not sure what day it is! I'm certain I would lose track in your place.

What you are doing is about the hardest job there is. Harder, I think, than going to Iraq, to risk dying or horrible injury. And that is pretty hard for very young fine men who haven't had a chance to live out a life yet, or those leaving small kids behind who might never have a father.

Nobody ever promised us a rose garden, as the song says. You are deep into the thorn patch right now, but the roses will bloom again, and you should have a whole garden full! No more thorns.

We love you and think of you every day!
Patty :)

p.s. You might tell Lewy that heaven is made of chocolate, kind of like a gigantic gingerbread house made all of chocolate! He can eat all he wants to when he gets there!

Letters

2008-05-20T21:39:00.000-05:00

Hi Pauline,

Karen here.

You have a right to be depressed. But it is situational depression - and when this very difficult but loving journey (I can't think of a better word, but "journey" does seem trite) you have undertaken is over, you will feel better. I'm so glad you had time with your friends. They must feel good, too, that they could be there for you. I bet they'll come whenever you ask.

And I totally understand about your gag reflex. My mom wanted me to floss her teeth - and I just couldn't do it. And that is so minor. You are a very visual writer - my stomach started churning while I read your descriptions. Is it possible for you to hire a caretaker from an agency to come each morning to clean up the phlegm and aspirate what's in his throat? Would that be too self-indulgent? Like treating yourself to a caretaker's shopping spree? I think you deserve it.

I wonder if the reason Daddy doesn't look out the window is because he is "blind" on that side. I understand that LBD can cause some not to register anything out of one eye. I can hold something right in front of Mom and sometimes she won't "see" it. She carries a handkerchief with her and when it's on her lap and she's holding it, she can't find it. But, I suppose Daddy doesn't see anything because of the stage he's at. Mom doesn't know where to put the toilet paper after she's wiped herself. She tries to hand it to me or put it down in her Depends. I'll repeat and repeat for her to toss it into the toilet and it takes so long for it to register and for her to understand what to do. She was always so supportive through my life, maybe I should just take the toilet paper from her and not keep trying to slow down her slide into oblivion.

Could you write sometime about some of the earlier stages in Daddy's disease. It all must seem like one big jumbled memory. I know you wrote about some aspects. How did he come to be diagnosed with LBD? If you did write about it, never mind. I probably read it and have just forgotten. I'm sorry that there is no longer any humor to recount. The earlier blogs did make me smile, even though my mom's LBD leaves me horrified that this has happened to her. I ask myself again and again, how do I feel . . . and I always come up with the word "horrified," as though I'm witnessing an unexpected and very serious accident. One incident last fall does seem humorous now and that was while I was staying with her, but had slipped away to visit my husband in our apartment. I received a call from a neighbor. Mom had telephoned her very distressed because I was trapped behind the glass on the face of the wall clock. She could see me. In fact, when the neighbor arrived, Mom was still seeing me and the neighbor had to unplug the clock and remove it from the wall. Then the neighbor called me. When I arrived, they were sitting at the kitchen table chatting. Mom seemed to realize that it had been an hallucination. Logic seemed to be one of the first things to leave as Mom became ill, but she had always been rather emotional and anxious by nature.

Keep writing. No one else is out there being so forthright about the witnessing of dying and the dealing with it. The Victorians wrote about the "Good Death" and the "Beautiful Death," making it look rather attractive. Thank you for not sanitizing it.

My thoughts are with you. And with Hubbie, too. It must grieve him to watch you go through this. Of course, he may also be thinking, thank goodness I married a woman who's going to take care of me in my time of need. Of course, you might just say, Sorry, done that. I'm kidding . . . I'm kidding.Karen

1 comments:

Spouse said...

Yes, it is uncanny how our Lewys do the exact same actions. Where to place the paper is always a big problem. My Lewy always asks where to put the used paper. I am trying out a new system to make it all seem the same. I'm tying a plastic bag on the leg of his bathroom commode, so he can always put his paper there.
I am also tying a plastic bag to the leg of his dining chair, so he can place his nose napkins in it. (He goes through 6 at each meal) To us there is a distinct difference, but to a Lewy, they are the same. To all of us it is all groooosssss !!!

Letters

2008-05-20T21:12:00.002-05:00

Hi Pauline, Karen here.

I think I understand what you're feeling. You had primed yourself for Daddy's death, believing that it was coming sooner than later. You were already grieving and probably telling yourself, "I can do this. . . . It won't be much longer."

And now, who knows when the good angel will swoop down for him? Maybe you've "hit the wall."

I don't have any advice, other than to suggest that you have another evening out with your girlfriends. I think it's so nice that you have friends. Use them.

I've decided to eliminate Risperidone, the potent anti-psychotic that reduced (though didn't quite eliminate) Mom's hallucinations and maybe her paranoia for the past 6 months. Whether it is contributing to her increased difficulty in getting her feet to move for a second or two, or to her lack of interest in TV or in the musical entertainments that troop through the cottage a couple of times a week , or to her off-and-on-again aphasia, I don't know.

She's been living at an assisted living cottage for 15 dementia residents for 5 months. I had started her on Risperidone while I was taking care of her in her home, perhaps for my own benefit (I had such a limited understanding of LBD at the time and just wanted her be normal again). When I told Peggy the Nurse at her facility that I wanted to wean Mom off of it, she surprised me with her enthusiasm. Turns out she is a great believer in giving as few mood-altering medications as possible.

Who knew?

I expressed my concern that Mom may give the attendants some trouble (she was never violent), but she said that Mom will probably just be more vocal and they can deal with it. It was your advocating for fewer medications, Pauline, that caused me to do more research on the Internet about the drug and how it interacts with LBD. So, we shall see.

Today, Mom was pretty adamant about my taking her home, but I think she meant her childhood home because she wanted to see her mother (dead now for 30 years). I finally put her into her coat and had her push her walker outside. She soon tired and grew cold and wanted to go back in.

A warm and cheerful fire and smiling attendants welcomed her back.

Best regards,

Karen

2 comments:

Stella said...

Karen, your post is so much what I need to read right now. Having brought my husband home from the hospital one week ago and he was on the whole variety of those meds and he went into such a stupor, I did not give him any more but it is the week-end and I am sitting here wondering just what in the world I am doing. I don't dare pick and choose what to give him because they are so powerful but the thought of him becoming like he was before the hospital scares the daylights out of me. I'm trying to be patient until the next office hours on Monday and I can talk to the doctor. Your post makes me feel like I can back off some of the drugs and he can go back to entertaining the pretty little girls and the home builders. Pauline remarked one time about the strange band of sisters we are. I watch for her reports of Lewy and pray for the angels to watch over her.

old friend said...

Thanks to you, Karen for your words of wisdom for they speak volumes to others that need a word of encouragement!

Letters

2008-05-20T21:12:00.000-05:00

Letters

2008-05-20T12:35:00.001-05:00

Hi Pauline, It’s Patty here.

Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.

All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.

First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.

She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.

After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.

She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.

She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.

All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.

So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.

My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.

And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."

She had lived a long good 95 years, and she thought that was enough.

Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think Your Mom would like for him to be there too.

You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.

Warmest hugs,
Patty

2 comments:
old friend said...
What wise words Patty wrote, truly from someone who has walked ahead of you. In remembering my FIL's journey toward death, what vividly stays with me is in the last few moments, my DMIL kneeling beside the hospital bed (which was in the living room also), and saying "I love you Harry" and in a moment of clarity, he opened his eyes and looked at her and in a very solid voice said, "I love you too, Betty". She then told him that she was going to be fine and if he needed to go that it was alright. There was something about her saying those words...kind of like it was permission...if you know what I mean.

Thank you for your courage in letting us see daily into your world...I know the good it is doing. It validates others who don't have the voice. WRITE on!

pearose said...
Giving permission to let someone die seems a very real need. It happened with my grandmother. I used to take my grandfather to see her every Sunday and it occurred to me one day to squeeze her hand and say, "We're taking good care of grandaddy." Later that day, my Mom went to visit and felt motivated to tell her she could go, if she needed to go. She died the next day. It was her 4 year ordeal in a nursing home that motivated me to get into the elder care side of design because at that time, warehousing was the key concept. She was passively neglected, along with every other resident and she seemed to be hanging on because of grandaddy - the man she had been married to for over 60 years.

Letters

2008-05-20T12:12:00.000-05:00

I read your blog every evening. It has made me feel less alone. My mom has LBD. My husband and I moved up from Wyoming to Idaho/Washington State line last summer, so I could take care of her (I'm an only child). I thought she could stay alone at nights in the house she and my dad built on 66 acres in the 1950s and I could visit her during the day ,feed her, clean up after the dog and 9 cats (we took an apartment 3 flights up - she couldn't climb those stairs with her bad hip). She insisted I was not her daughter, despite the neighbors vouching for me.

She had been pretty paranoid for about 3 or 4 years about me, which I found painful on my yearly visits. During the previous year, she'd sometimes call and accuse me of trying to steal her land, though normally we had pretty good weekly conversations. We'd always been so close. My son had moved up from LA to help her out the year before, but after 6 weeks she accused him of planning to murder her to inherit the land. She had a gun, so he moved out quickly and she wouldn't have anything to do with him until I came up for Mother's Day last year.

It was then that I realized how much she had deteriorated. A good neighbor had kept things going while emailing me about her gradual deterioration. Alzheimer's disease, I thought, but so odd. She began having hallucinations of strangers and my late dad in the house having noisy parties. One minute she knew me and knew something was wrong with her ("Oh, you're going to hate me," she'd say sadly. "No I won't, Mom. I love you."), the next minute I was some distant relative trying to take advantage of her.

I took her to the Memory Clinic, and also searched the Internet. I suggested LBD to the doctor there. At first the doctor was skeptical, but after consultation with the psychologist and social worker who also interviewed Mom, that was the diagnosis. She's 83.

I didn't want her to have a second mastectomy in August when a small cancer was found. I felt it would make her worse, but she accused me of wanting her to die, so I relented. She tried to pull out her tubes after surgery and the hospital had to put a watch on her all night. She thought she was in jail. I took her home the next morning. (7 years earlier she'd come through her first mastectomy with flying colors).
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Here is a humorous incident that came out of that. About a week after her surgery, the incision began leaking. I had her hold a towel to her chest and took her into the surgeon. As we sat in the waiting room, she turned to me and asked, "Why did you shoot me?" The couple nearby stiffened. "I didn't shoot you, " I gasped. "You had a mastectomy." "You shot me with a bee-bee gun," she said knowingly.

Within a few days, she turned it around to her having shot me and began calling neighbors to help find her a lawyer. After a month of living with her, I went back to sleep at our apartment each night. One morning she called at 5 a.m., in a panic. We went to her rescue. The next night she called me at 3 a.m. The following night the phone rang at 4 a.m. …"Hi, Mom," I answered.

The male voice on the other end identified himself as a deputy sheriff. "You mother is confused and called us," he said. Thank goodness I'd taped my phone number on the telephone for Mom to use. I began staying with her 24-hours a day again. Despite an anti-psychotic for hallucinations (I know that some say don't give them to people with dementia, but Resperdal did eliminate most hallucinations, and I haven't found much in the way of side effects).

At night she thought she was somewhere else and that the house she'd lived in for 50 years was evil. She asked me to find her some place safe to live. 5 weeks later she agreed to try assisted living. There was a cottage for 15 people with dementia, and they had an opening. It has taken some time for her to feel comfortable there, mostly because of her paranoia and practically no short-term memory. But she's happy to see me every afternoon (I'm now her ally, rather than her enemy). I still do some of the things for her I did before, so I feel useful. And I advocate with a staff that truly wants to make her stay there peaceful for her.

I did want to mention to you that Mom had a pressure sore at her tail bone (she slept in her rocking chair until we brought her mattress to the cottage), and it just wouldn't heal because of the bacteria from fecal matter getting into it, until a contract nurse began using the antibiotic Silva Sorb Gel on it. You might mention that product to the nurse who treats Daddy for his pressure sores on his rump.

I think you're doing an amazing thing. I know you are exhausted and filled with grief. I cry every day about my mom (sometimes even when I'm with her - she puts her hand on my hair when I bend to lift her feet up), and I cry again when I read your essays.

Fate has been unkind to her, for she took care of my schizophrenic dad during a 50-year marriage, and only had about 10 years of peace before she began having problems.

And I'm glad you write about the intimate care issues. Those of us who also deal with fecal matter salute you.

Best regards,

Karen

1 comments:

Pauline said... Karen, Thank you so much Hubbie and I do appreciate the letters. It lets us know we are not along in this maze of dementia. Please keep thise cards and letters coming in...
OBYW, there WILL be a Lewy artic;e on a "Fecal Matter Salute" Thart's just too good to pass up...

Kindess Regards,
Pauline

Letters

2008-05-20T11:28:00.000-05:00

I feel at this time I must say to all of our readers that you have no idea how much you help us by commenting on the blog, or sending us personal emails through the “contact us” link. You all give us the strength to proceed through today and the next day.

I’m so glad I started this blog…it was such an unplanned accident. It started out as a Christmas gift for Hubbie to play with because I know how he loves to write. As with most Christmas presents, it was politely received but not used. So I thought I’d keep it up just in case he decided later to get interested; after all, I had spent a few hundred hours trying to figure out how to post, edit posts, insert photos, all that stuff that with Blogger there are very scant directions. I chased all these things down one by one, even to the point of attempting to learn HTML code….just to find out there was a much easier, simpler ways to accomplish the same things.

Hubbie, I think, - it is a blur to me - had the thought of writing about Lewy. He says I thought it up, but I think he planted the idea, if indeed I did actually move on it first.

I guess what I want to say is; how much we appreciate the comments and letters. I’m going to post one of the letters (with permission, of course), to say thank you and let you know we realize most of you have your own Lewys, that are either right where we are, are approaching, or have reached the final stage of life and departed this world.

Letters:_______________________________________________________

Stella,

You sure have your hands full. For me, having Daddy at the NH was the hardest of all. Selfish reasons, like it kept me from doing anything other than dressing driving sitting and driving. Not very productive. I'm so glad you have a large family there with you.

Unfortunately, you are correct, you must be your patient's advocate. I wonder if the patients would get anything other than minimum required care (if that) if there were no family member bugging the staff to do more.

We are rocking along pretty well here. I may be settling down into the realization that Daddy will be gone soon and I need to not fight that. It just goes against my grain to let it happen though.

Then logic kicks in, and I know he is miserable.

I want my Mommy.

Pauline
_____________________________________________________________

Pauline,

Of course, your want your Mommy. You need your Mommy, but you have the next best thing. You have her teachings. You could not do what you are doing without her life as an example. She had her hands full keeping her little family on the straight and narrow. I'm not sure it always worked with the rascal, Daddy, who loved to "get her goat" with his teasing. A family spending years together creates such a wonderful mural of life. At the time it is being painted, it appears to be bits and pieces of color. A picnic here, hard work there, surely it will go on forever.
No, it constantly changes, and sooner or later it is finished. Looking over the lovely work, all the episodes blended together, the rosy pinks are prominent with the darker colors in the background. The dark colors fade and disappear, leaving the happy memories. Right now you are painting with dark blues and grays. They are important to the finished work. Be proud of your work. Mommy would be proud. She would say, "Well done, my child".

Stella

_____________________________________________________________
All I could do was cry. Every time I read that I loose it. Stella, your letter was wonderful! Thank you so much! It was as if you knew my Mother was a painter.

Pauline.

4 comments:
Stella said...
Ahhh! The last sentence makes me feel like an angel talked through me. I am so honored to be mentioned in your BLOG. That was fun. Thank you.

old friend said...
Stellas' words reminded me of this Corrie Ten Boom poem I have carried with me for most of my life...My Life is but a Weaving

My life is but a weaving
between my Lord and me;
I cannot choose the colors,
He worketh steadily.
Oft times He weaveth sorrow,
And I, in foolish pride,
Forget He sees the upper,
And I the under side.

Not 'til the loom is silent
and the shuttles cease to fly,
Shall God unroll the canvas
and explain the reason why.
The dark threads are as needful
in the Weaver's skillful hand,
As the threads of gold and silver
in the pattern He has planned.
He knows, He loves, He cares,
nothing this truth can dim.
He gives His very best to those
who leave the choice with Him.

What a blessing to have a circle of caring people joined together, like a triple braided rope...STRONG unbreakable!

pauline said...
Ye shiver me timbers - OLD friend.;-}

Hubbie said...
Oh My God Stella!! Pauline had not shared your e-mail with me before. It is one of the most beautifull things that I have ever read. Make that THE most beautiful. Thank you so much.

Letters

2008-05-20T10:37:00.001-05:00

The Carmen Foundation

“Louie Who…?”

…was my initial response in 2004 during a consultation with our fifth neurologist when, after another exhaustive exam, he suggested that my 80 year old husband, along with Parkinson’s Disease (PD), is probably being challenged by Lewy Body Disease (LBD).

After weeks Googling, I learned much more than I ever wanted to about the myriad of misfolded proteins that are randomly zapping Milton’s neurons with no antidote in sight.

Though Parkinson’s and Alzheimer’s have become household words, Lewy Body Dementias remain under the radar even though they are the second most common form of dementia in the elderly-- affecting over 1.5 million individuals and their caring families—even though the disease has been recognized since the early 1900s while Friederich H. Lewy was studying Parkinson’s Disease.

For the last four years, we have been using our small Carmen Foundation to support the research being conducted at the MassGeneral Institute for Neurodegenerative Disease (MIND) by Drs. Anne Young, Brad Hyman, Alex Kazantsev as well as the Michael J. Fox Foundation and the Lewy Body Disorders Association (LBDA). This intense immersion has given me hope that antidotes are on the horizon to stall, cure and prevent many neurological diseases.

Since the work at MIND focuses on the protein (alpha synuclein) implicated in the dementia found in both Lewy Body disorders (now considered an adjunct of Parkinson’s) as well as Parkinson’s, we hope to partner with other organizations and individuals affected or interested in being part of this 21st Century research.

We are calling this project:
BEYOND THE BLOOD/BRAIN BARRIER: Antidotes for PD and LBD

The human brain is encased in a thick skull to protect it from trauma. It is also defended internally from noxious chemicals and toxins by the blood-brain barrier, an intricate system of impermeable blood vessels that prevents most substances from entering the brain from the bloodstream.

Like the walls of a castle, this system deters the brain’s chemical enemies, but it is unable to distinguish between harmful substances and those that might be therapeutic. The blood-brain barrier is therefore an enormous challenge in the development of treatments for many brain disorders.

The Carmen Foundation is committing $300,000 as a Challenge Grant to MIND and their collaborators around the world to raise another $700,000 to proceed with creating a new class of antidotes using mouse models of PD and LBD.

Why MIND?

MIND researchers, led by Drs. Young and Kazantsev, have had success finding compounds that can cross the blood brain barrier and look to be effective in mouse models of Huntington's disease. Their goal is to replicate this success in LBD and PD.

Please join us in this cutting edge 21st Century philanthropic effort. Each of us can make a difference that will benefit future generations.

Sincerely,

Marjorie Carmen

_____________________________________________________________________________

March 10, 2008

To: The LBDA
From: The Carmen Foundation

Once again, we are pleased to place our support in the LBDA by enclosing our check in the amount of $50,000. We are confident that our contribution will be used in the best possible manner and therefore, we are not designating funding a specific project.

Observing that the organization’s expansion gives us hope that with more public awareness of Lewy Body disorders, antidotes are closer to being developed.

We request that any projects using our funding will be noted in the following manner: “…Sponsored by The Carmen Foundation, committed to 21st Century Neurological Research and Solutions.”

Our hope is that the association will collaborate with other organizations dedicated to finding solutions for the myriad of neurological issues that continue to plague our ageing population.

Sincerely,

Marjorie Carmen, M.Ed.
Co-Trustee, The Carmen Foundation

_________________________________________________________________________________

http://www.mghmind.org/support.htm ..Support The MassGeneral Institute for Neurodegenerative Disease

2 comments:

Stella said...
Thank you, Marjorie, for all you do. Also for coming on here while Pauline is caring for her father. You have given us much to consider and work with. Four years later and I am still hearing, "What is Lewy Body?". I suppose It will require a U.S. Senator or a spouse to be afflicted before it sweeps the country for recognition. You have shown that much is being done with a long way to go.

Anonymous said...
Thank you Marjorie!
This is wonderful news! I'm a LBDA volunteer in Boston, MA. I've met you before - in April 2007 during the Neurologist Convention. We have a LBD local support group that has become quite active - we meet monthly in Jamaica Plain, MA. Should you want to work together in upcoming MA events - feel free to contact me. I have a few guests who are 'in the works' to attend our local support group meetings that you may be interested in. Pauline has my email. :) Victoria

Letters

2008-05-20T00:37:00.001-05:00

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Hi Pauline, It’s Patty here. Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.

All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.

First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.

She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.

After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.

She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.

She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.

All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.
So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.

My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.

And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."

She had lived a long good 95 years, and she thought that was enough.

Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think your Mom would like for him to be there too.

You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.

Warmest hugs,
Patty

Lewy’s Final Farewell

2008-05-17T23:51:00.004-05:00

Friday was a cold and overcast day, appropriate for a sad farewell. We were not able to arrange the gun salute, but we did find out that it could have happened if the funeral director had been more resourceful. We found out too late. So yes, you can get the salute, you just have to know where to find the people that do it. The VFW or American Legion have posts that do these things. It is the regular military that does taps and the flag presentation.

We were so fortunate to get a live bugler rather than a taped version. He did a beautiful job. The flag presentation group was so very precise, so very respectful, not enough words can say how much it meant. The Navy Major that presented the flag was so kind. Perhaps and I guess certainly they get lots of practice.

Mostly we were glad that Daddy got in the Nashville National Cemetery in Madison. I watched that cemetery grow from just a few head stones to the monster it is today with over 36,000 of our military buried there.

We want to share the ceremony pictures with all our virtual friends, and to say thank you for reading. Thank you for caring. Thank you all for being there with us.

So many who have gone before:

Hubbie reads from The Prophet:

A few final words from Hubbie's brother:

Air Force Bugler playing Taps:

Saluting through Taps:

Folding of the Flag:

Flag's final fold and hand off:

Folded flag presented to the Naval Officer:

The Naval Officer presents the Flag to Pauline on behalf of a Greatful Nation:

The Cemetery Officer presents Daddy's final resting place to Hubbie and Pauline:

Daddy's view:

Please sign the virtual Visitation Log

3 comments:

Laine said...
Beautiful.
And, while he definitely does have an impeccable view from his resting place...imagine the real view he has now.
Peace.

pearose said...
You honored your father well, Pauline. The honor guard did the same - very respectful. The female officer that handed you the flag seemed amazingly sincere with her thanks for your Dad's service in World War II. Very touching.

Having a beautiful resting place is the very least our veterans deserve and the Madison National Cemetery is simply stunning.

Thanks for sharing his life and death with us. Your father is at peace now.

Stella said...
A life which is worthy of the beautiful setting for his final resting place.

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight". K.G.

Squirrel Anyone?

2008-05-15T23:48:00.000-05:00

The funeral director called today to confirm the time of the ceremony. Unfortunately he said there would be no gun salute “because we are in war time”. Only active duty and retired military get the salute during war according to him.

Seems a bit odd. I would think every city with a military cemetery would have enough retired or ex military to perform the salute. I’m going to sick my nephew on this first thing in the morning. He used to be part of an honor guard, maybe he can figure out how to make it happen….

Of course being redneck hillbillies we could just carry our own guns – maybe shoot up some vittles while we’re there.

3 comments:
Stella said...

One of Edward's favorite stories was about rounding up a group of ex GIs to be honor guard for a veteran in a small town nearby. He was working in his father's Sash and Door factory at the time and being the boss's son, he announced he was taking off for a few hours to help bury a fellow soldier and he was taking two of the other workers with him. The services were complete with "Taps", patriotic music, salute with the rifles, and folding of the flag. Edward was proud to have been a part of the touching ceremony. On the way home, Edward turned to one of the guys he had recruited to help and asked, "Hey, Speck, which branch of the service were you in?" Speck answered, "I didn't serve, my number was in the next batch after the war was finished". ...

"Where there is a will, there is a way"..

kddove said...
maybe they are trying to conserve bullets, since all of this war-time stuff sure isn't cheap...

Denise said...
We had a similar situation when my father, a 30 year navy veteran and Pearl Harbor survivor, passed away last October. He, too, was to be buried with full military honors as was due him. The day before the funeral we were told that the navy did not have the personnel to honor my father; we were devestated. My brother, a Coast Guard veteran, called every base up and down the California coast and demanded that the navy send a guard out to honor our father. The navy complied and my father had a 21 gun salute, folding of the flag (one that was flown over the Arizona on 9-11) playing of the navy hymn, taps and someone to present the flag to our mother. All I can tell you is don't believe what they're telling you, the squeeky wheel oiled.

Thank You

2008-05-12T23:46:00.000-05:00

I wish to thank everyone that left messages on our visitation log, and especially thank all of you who came to our non-virtual visitation.

You have all been so kind with all the emails, phone calls, and food…goodness gracious…the food! Please know that your outpouring of affection has touched us both deeply.

But now our story is over except for some minor details.

Daddy’s brain harvest went smoothly, thanks to everyone at Hospice, the funeral home, Vanderbilt, and Harvard.

We are waiting on the paperwork/permits etc. to cremate his remains. There is some question as to the availability of a space for him at the local National Cemetery in Madison. He will be receiving full Military Honors at his burial.

We will take some photos of the ceremony and post them in the e-book that was requested / suggested by so many of you. In the next few days, I will have the Living with Lewy Body e-book prepared including all of the posts about Lewy, all the comments, and letters, with some added photos (the 64 ½ Candy Apple Red Mustang, among others).

Once it is completed, it will be permanently linked from www.Streetalker.com.

As far as the Living with Lewy Body Daily Journal goes…If someone wants to take it over and make it their own, please contact me.

Again, Thank you all for reading and supporting us in our time of need.

And Mark, I’m so sorry to hear about your Mum’s passing. Take heart that she is no longer suffering from this horrible disease.

Perhaps Daddy’s brain will help find a cure.

If you have not signed the virtual Visitation Log, please do.

3 comments:

kddove said...
Thank you for sharing the lewy daddy story... it was the first thing i read every morning. sad, happy, hopeful, hilarious at times. i will miss him, though i only really met him twice. when the food runs out, can i take you to lunch?
love, kd

Hubbie said...
Hubbie here.

It’s Monday morning, sunny and 50 degrees. Pauline is still asleep. I’m taking this day to finish up some loose ends and prepare to go back to work tomorrow. I just read Pauline’s Thank You post and wanted to add my thanks as well.
Mark I am so sorry to hear about your Mum. Hold that boy of yours tight as we hold you in our hearts. My very deep and heartfelt thanks to all of you for your participation in this blog. Pauline’s original idea was for it to be a present for me. I have never in my life been so glad that I turned something down. The writing and reading the responses from all of you has been such a great aid to Pauline through these last few months.
We still have some details to go through. Pauline is putting together the e-book version of the blog for posting. I still have the urge to do a hardcover version, even if it is just a copy for me. And of course we still have the big thing to do………….learn to live without Daddy/Lewy around. I got up to make coffee this morning and found myself momentarily surprised when I looked over at his bed and saw a couch there.
So we’ll miss Doug just like we miss Pauline’s mother and my Dad. We will also miss you. We hope someone will take up writing stories of their Lewy. Pauline may even move on to write about other stuff. But it won’t be the same. Things change. Life moves on. Thank you so much for being part of ours.

Boone.

old friend said...
I am so glad that you launched this blog, Pauline. And while I will miss that daily connection to you through your words, I know we'll just move on together in another way. Bless you for your courage, your vulnerability, your sense of humor and your faithfulness...all these speak to how much you loved your Daddy.

And to you, Hubbie, love you for standing by Pauline and Daddy...now you two go on about this business of living, there's weeding and hoeing to get to....

Lewy's Last Night

2008-05-09T23:40:00.000-05:00

Lewy is safely tucked away at the local hospice. Out of fear of loosing him in the middle of the night, and the extra 2-3 hours it would take to get him pronounced and transported into Vanderbilt, I wanted him moved here so we could have a bit more time should a hiccup happen.

It’s almost midnight. I’ve been sleeping in the floor next to him. Even though this little trundle bed is not very comfortable, it is the best sleep I’ve had since Sunday night. No doubt it is just one less worry gone from my mind.

The doctor who examined him when he arrived said we maybe had 48 hours, but listening to his breathing…I don’t know…it is getting slower; definitely slower. For some reason the eyes that had not opened in days opened during the ambulance ride here. We tried to shut them, but they refused to be closed. So now his glazed eyes stare at the ceiling.

2:50 AM

I had been lying on the bed in the floor next to Daddy, listening to his every breath. They are now separated by many seconds and are very shallow. I thought I’d look at his feet to see this marbling the doctor told me I would see.

His feet were now cold. They’ve been really hot for the last couple of days.

I looked up at his face, still the cold stare at the ceiling. He took a tiny breath.

And that was it. I waited for the next one, but it did not come. I felt his chest, and then the jugular, I could not detect any beat at all. I went into the hall and told the nurse I thought he had passed. She came in directly and listened, then took her flash light and pointed it into each eye. There was no reflex.

She reached up and closed his eye lids. She pronounced him at 2:56 AM.

I called Hubbie.

The Hospice ladies faxed and called Harvard, Faxed and called Vanderbilt. I called the funeral home for the transport vehicle.

It is now 5:40AM. We are home, and the Funeral Director called and said the body was delivered, the receiving personnel knew who Daddy was and exactly what to do.

So Daddy is on his way to Harvard. Do great things, Daddy, Do great things.

14 comments:

pearose said...
Good night, Lewy. It's been a pleasure knowing you.

Dee said...
Rest in peace now dear Mr Lewy, i'll miss you.

Anonymous said...
God bless you, Pauline and Hubbie for your loving kindness to your Daddy. You ran the race alongside him and honored and respected him...may your rest be peaceful and deep now.

3rd Wife said...
I am proud to have known Lewy.
Pauline and Hubbie--you did good.

“Death ends a life, not a relationship.” Robert Benchley

I think a little bit of Lewy will on in all of us who followed his struggles...

3rd Wife said...
that was supposed to be "live on in all of us..."

typing through tears..

kddove said...
He knows how much you loved him. You proved it every day.

Dee said...
Deeeeeep breath...grabbing the tissue box...letting out a sigh of relief that Lewy's iron-clad grip on him has been released.
My very best to all of you.

hassana said...
Your love will always be with him, may he rest in peace, God bless you Pauline and Hubbie

Stella said...
My prayer was, "Whatever is best for Daddy". My prayer was answered. Why do I weep? My prayer is now one of thanksgiving.

Rose said...
As I've read your blog, I've chuckled at the old stories and at the spark that seemed to be in your father until the very end. Then I grieved as the spark was being extinguished. I won't forget him.

You have my sympathy and my deep respect. Despite how hard it was, you stayed the course until the end and took wonderful care of your father.

Anonymous said...
I accidently found this site when my husbands grandmother was diagnosed with LBD last month. I read every entry. I laughed and cried, but right now I feel sad. What you did for your father was nothing short of wonderful and I can only hope my husand and I can provide as much love and understanding to our "lewy" as you guys did. May God bless you both.

swruthie said...
Hope hubby told you I came by. Glad you were resting. Hadn't gotten "the word" - phone call came after I had already gone downtown Th pm, then didn't get "final word" till after I stopped by. Will try to come by Sat. Can't promise - will call if I don't make it. Thinking of you! Deep breath.

Mark said...
God bless....my mum who I told you about with LBD passed away yesterday 9th May about 1820 UK time, I had visited in the lunch time and prayed aloud for her and told her I loved her and not to be afriad, that God loved her, her breathing was not good. I returned to work at 2pm and felt the urge to return to her at 6pm I walked into the room where her resting position had just been changed, she was wearing a oxygen mask and had passed away as I walked in, I called the nurse and awaited the arrival of dad and siblings, I miss her so much, I had to break the news to my 8yr old son , it was awful we slept in the same bed and cried ourselves to sleep.......

Stella said...
To Mark. May God bless you and give you and your son peace as you tend to the duties required. Thank you for sharing your sadness with us... May it lessen your burden a wee bit.

In Memoriam

2008-05-09T23:37:00.001-05:00

Date: May 9, 2008

Douglas Wilford Cotton. (AKA "Lewy")
Born January 13, 1924 in Cottontown, TN
Died May 9, 2008 Age 84

Douglas passed away at the Alive Hospice Center in Madison TN. He had been living in his daughter’s and son in laws' home in Cottontown through his last 11 years of a 12 year battle with Lewy Body Dementia.

He is survived by his daughter, Kathi Pauline, and his son in law, Boone Gregory. He is also survived by his grandson Douglas III “Trey” and his wife Bonnie Cotton of Gallatin, and his sister Maynard Estelle “Tom” Scott of Gallatin.

Douglas was preceded in death by: his wife, Pauline; his son, Douglas Jr. “Sonny”; his grand daughter Joy Lynn Cotton; his parents Vernie Lou and John William Cotton; and his sister Emma “Tinker” Louine Blankenship.

He served in the United States Navy’s 7th Fleet during World War II in the South Pacific aboard the USS Currituck (AV-7)

After the war he and his bride settled in Madison, TN. where they raised their two children. He owned a real estate company and through the 1960s owned his own residential construction company. After being employed by American Motors and then a local Ford Dealership, he opened his own company “Mobile Housing Sales, Inc." in Goodlettsville. He kept that business from the late 60’s through his retirement in 1980.

He and his wife, Pauline moved to Naples Florida were they spent the rest of their lives together. After Pauline passed away in 1997, Douglas moved in with his daughter and son in law back in Tennessee.

He was officially diagnosed with LBD in June 2005.

His brain is being donated to the Harvard Brain Tissue Resource Center for research into causes and cures of Neurological disorders.

For local friends and relatives, visitation will be held at his home in Cottontown on Saturday May 10 between the hours of 3PM and 6PM.

For Virtual and local friends, we request that you please sign our Visitation Log.

Laugh at Every Opportunity

2008-05-08T23:34:00.000-05:00

Today we waited.

Three separate girlfriends came by today to visit and bring food. This along with my nephew who has stood vigil with us since Tuesday morning and brought food…We are tired but well fed. Daddy on the other hand has not had any water since Saturday AM. Nothing, no food, no water.

He is hot to the touch. I keep looking at his feet for the marbling the nurse spoke of, but I don’t see anything that resembles her description. I am expecting that he will quit generating so much heat and will cool off…perhaps that is Hollywood fantasy on my part…his skin feels hotter and hotter. He is perspiring, even with the minimal covers pulled back.

Daddy’s respiration has been the same for so long now; it is beginning to sound normal. Bless his heart; he is a fighter…stubborn to the very end. I just checked his BP…92/48. Pulse rate 94. Since he has no physical illness other tan LBD with some PD on the side, I wonder if his heart will carry him for a while. They always said he had the CV system of a 40 year old.

Now when he breathes his mouth is curled back around his gums, his breaths are short and shallow. He is hot all over. Perhaps expulsion of heat energy is one way of letting go Life’s Force. You cannot destroy energy, but you can dissipate it.

I told Summer, the Nurse’s Aide I thought we could skip his bath today. Perhaps that was a mistake. I went into sit beside him and with a bit of private time, I told him again that I loved him. That he was a good Father, and I had Hubbie and Nephew Trey here to take care of me. Daddy was old school about who takes care of whom…I took his hand from under the cover and went to kiss it….OMG! Crotch…no…HOT CROTCH…ShooooWeeee. Ummm. Nasty. I had to get up and go scrub my hands. It took two complete washings to get the smell off. I wasted no time soaking a rag in hand sanitizer and cleaning his hands. I left them on top of the cover this time.

There is no response to any stimulation. I thought perhaps I could get a hand squeeze, but no. Just limp.

Vanderbilt called several times today to coordinate the transfer to VU and the harvesting. I have a “To Do” list - a single spaced typed full page of things I have to do to make the donation happen. All of which cannot start until the time of death. As lucky as I have been by getting proper contacts by knowing someone who knew someone who knew someone, this process is not easy. Congress should figure out how to get donations done without so much effort, so much paper work and it should never cost the donor or the family of the donor a dime. I can see why people might shy away from donating organs with all this legal CYA crap. Fax this; sign that; get two witnesses; one set for Harvard, one set for Vanderbilt, I bet there will be another set for the transporters.

Unfortunately we have not heard from Hospice today, other than the Nurse’s Aide calling. We were hoping to hear about getting Daddy transported to the Hospice center so the harvesting coordination could be faster and easier. I guess they do not have an available bed, but I wish they would call and tell me one way or the other. Taking shifts around the clock so we can be sure to get him iced immediately is pretty tiring and stressful.

Otherwise, to my girlfriends that came over today....Thank you. Having someone to talk to about work, flowers, the weather, sex…anything other than death is so appreciated. My wonderful girlfriends were with me today in shifts from 9 AM to 9 PM. Thank you. Thank you. You have no idea how much I needed the company.

There’s a lesson here for me…when this is happening to someone else…I’ve never known what to do. Now I know. You go visit, you pick up the phone, you write. You take over food. You sit when its time to be quiet and you laugh at every opportunity in between.

5 comments:

old friend said...
...so tell me, Pauline, what kind of food did those girls bring? like Loveless Cafe biscuits, Center Point bar-b-que, I'd even take a mess of greens and pot lickker...I'm so hungry

Hubbie said...
Hubbie here. Pauline agreed to take something to help her sleep and she is in bed now. No dogs aloud. The hospice nurse called around noon. They are coming out this eveing to take Lewy Daddy to a facility in town. Our vigil will transfer to there. Thank you for keeping her in your thoughts. It really does help. Thank you.

kddove said...
will you let us know where?

Laine said...

I finally read through every post. Phew! I feel schizophrenic right about now, having gone through every emotion known to man in such a short amount of time. Your honesty and detail are heartbreaking and then side-splitting...a laugh-riot and then treacherous. It's great. But I do ask myself WHY is this happening to any of us. I like to think everything happens for reasons we just don't get right now (hindsight is always 20/20, is it not?), but, my god, I just don't know sometimes. Again, I hope you know that you have done so much for so many of us, and that we are with you every step and every blog entry. I wish you all peace, REST and complete happiness. One day I hope we can all understand this. Thank God for the moments that make us laugh hysterically, and the complete irrational nature of this disease...sometimes I just smile and shake my head at the things Lewy makes them say and do. Or I look up toward the sky, shaking my finger and accusing my Mom of laughing at this whole situation and because she escaped it in the nick of time! Oh, and I KNOW she's laughing alright! But I'll get her back for this in time! Ha! I went to see my own Lewy today and he was having a pretty good day. He wanted to go to Long John Silver's, so off we went. Some disasters, probably needless to say, but a good day nonetheless.

Dee said...
Thinking of you all and wishing a peaceful end for Mr Lewy.

Counting Down

2008-05-07T23:31:00.000-05:00

I’m sitting here at the foot of my Dad’s bed listening to his breathing. I’ve moved my laptop in to the living room where he is, because his breathing is no longer loud enough to hear in the next room. My nephew is asleep on the back porch after taking his watch from 10 PM to 3:30 AM. It suits me fine to get the early morning watch. I was so stressed and worn out yesterday; I went to bed as soon as Hubbie got home.

Bless my nephew…he cut the grass for me. Bless him again for being here. After Daddy passes, he will have only his maternal grandfather left. No parents, no siblings. Small families kinda suck at times like these. My nephew “Trey” is all the blood kin I have left on my dad’s side. On my mother’s side, there are dozens, but I would not know them if they pulled up in the driveway.

Daddy is breathing fairly regular now. Regular for a normal person. Regular for him is screaming loud snoring.

Oops…he just had one of those pauses…Funny how my breathing seems to want to pause with his. Then I get to focusing on his breathing, and my breathing pattern wants to change to match his. He is breathing faster than I am, about like I would be during an easy walk.

When Nurse Lindsey listened to Daddy’s breathing Monday morning, I saw her expression change. It was the change from “Hi! Here this is my friendly face to cheer you up” to her “Oh, geez, it’s time to tell her” face. Every muscle in her face dropped. It was incredibly subtle body language, I only had a profile view, but unmistakable. I knew that the last two of the final ten items had been confirmed.

Nurse Lindsey had brought along another nurse for today’s visit. I wonder if they do that for the pronouncement to the family day…or if it was just an routine dual visit, perhaps a new nurse to Hospice and was getting a first day tour…I know they talk in group meetings about each of their clients so they had to know from the Nurse’s Aide’s report from Monday that things were not good.

They were unable to get a BP reading off my electronic device. Nurse Lindsey got a 60/40 with the traditional method. The gurgling in his lungs no longer requires a stethoscope to hear. His skin is getting very pale. He no longer responds to me misting his open dried up mouth. I mentioned this to Lindsey, and she confirmed what I deduced from the last squirt, was that now, I must be careful doing that. It will go straight into his throat and just sort of linger there.

What ever position we’ve put him in since Saturday is exactly how he has remained until we rudely interrupt his peaceful sleep to tend to him. At this point, I’m not so sure I want the aide to clean him up, at least no more than absolutely necessary. It seemed to cause him so much anxiety and pain the last time….and for what?

We are waiting on a phone call from Hospice to tell us what to expect…a room at their center, or perhaps someone to help with the 24 hour vigil, or even a heart monitor would do. The Hospice people have been extremely concerned about the logistics of the actual death, pronouncement, and brain donation requirements. I cannot express how much I appreciate that they are fully involved in the donation and not just throwing it all back on us to deal with. They are trying to get Daddy a bed at one of their units in town. That way there would be someone 24/7 to pronounce him, and the transporters could have him on his way to Vanderbilt with in minutes, not hours, like it would be if he passes during the night out here in the woods. Either way, I think the brain will be OK, but fresher has got to be better, and with the forecast for the next few days, the less mileage to have to travel with the clock ticking the better.

The neighbor’s rooster just crowed. It is beginning to dawn outside, the summer birds are chirping away. Its going to be I think, one nice day before the storms.

3 comments:

kddove said...

i wonder if you can be a hospice volunteer with no medical experience... would you like for me to take a shift watching him?

old friend said...

I'm up, Pauline, keeping this vigil with you.

Stella said...
I am wondering what are your wishes. Do you want a bed in town, a heart monitor, or more help with watching him? I notice that my prayers are not for a particular thing but for what is best for you and Daddy. I know that will be the way it will work out. This net work of new found friends care about you.

Counselor’s Call

2008-05-04T23:27:00.000-05:00

Friday is the day that all of the Hospice people assigned to Daddy come out. Summer, the Nurse’s Tech was out and cleaned Daddy as she normally does, brought me a fresh box of gloves, got the message relayed that we needed more meds, and radioed the new nurse, Lindsey, about Lewy’s lack of out put into the catheter bag. He is urinating, it’s just slipping out along side the catheter tube into his diapers.

I had been so OK with the catheter, but now I have just plain old incontinence again. Again I am irrigating and now inserting suppositories to help him have a bowel movement. No one ever asked if I wanted him to have bowel movements…I was just fine without that.

As a friend pointed out, and I may have already posted it, but I had always said I could deal with Lewy as long as he could walk and knew who I am.

He can’t walk, and I doubt if he knows who I am more often than not. So here we are, changing wet linens, wiping butt, irrigating his bladder, and worst of all cleaning up the phlegm. I guess there is no need of thinking I can’t keep him here up until the end…that is until they say he is about to depart this world, then I think the Hospice center would be better, only because of the brain donation. We have several bags of ice in the freezer waiting…just in case.

I had a doctor’s appointment so I missed Nurse Lindsey. I had wanted to talk about the catheter and the lack of pee in it. But it is never a problem with Hospice, when Ruth, the grief counselor arrived she made the call to Lindsey and put me on the phone. Now I know if the diaper feels full; even after a couple of days…that is enough out put. I am not to worry, but should I decide to worry, I had her number.

No worries mate, no worries…

The counselor and I sat and talked for a while. She, like me, is a left wing liberal. It was obvious from her worn and tattered Kerry/ Edwards bumper sticker, along with “Give Peace a Chance” and a few other stickers about saving the planet and other such leftist slogans on her mini van. I knew I could be comfortable with her and not have to be careful of what I said. But all of us left wingers are not necessarily into “New Age” things like Healing Touch. I knew of the concept from a dear friend who years ago did the Healing Touch thing over my back (She never touched me) and I remember clearly that my incessant back pain went away. I never understood her explanation of it, but it has to do with getting a person’s lines of energy in order, or properly aligned. The Healer may neve touch you in the process, or they may gently touch you.

After talking for a while the grief counselor mentioned that she practiced the art of Healing Touch, and asked if she could try to “reach” Daddy who at this point in time was deep into a semi comatose state. Sure, why not? I found the process curious, but after my first hand experience with it, who am I to dispute the technique and what it accomplishes?

She asked me to light three candles. The room was sort of dark because of the thunderstorm going on outside, and the rain was loud enough to be clearly heard at Lewy’s bedside. The occasional flash of lighting and rumble of thunder only seemed to help set the mood.

Ruth walked over to Daddy and spoke to him in a very clear calm peaceful way. She called his name. He remained asleep. She began to do her work - the "Magnetic Unruffling"- by starting at Daddy’s head and with both hands she made a motion like she was brushing out hair from a center part. Long hair that went perpendicular to Daddy’s body then flipped up on the ends. After she made the “flip” at the end of the hair I was imagining, she would twiddle her fingers like she was spreading Fairy Dust or glitter about; flitting out some unseen very tiny things from her fingers. She repeated this stroking motion with both hands over and over. As she did them, she moved from the top of his head to about his knees.

She then went back to the top of Daddy’s head and made similar motions but it was more like pulling hair up into a ponytail straight up off the top of Daddy’s head. Again after finishing each stroke of the ponytail she would twiddle her fingers as if to flick something off of them.

After a bit of this Daddy and Lewy woke up. Daddy was in there, trying to talk. Lewy was in there trying to reach out and take Ruth’s hands. She took his hand and held it for several minutes, talking to Daddy about how long he had lived and how long he had fought, and that it was now time to turn loose and go be with Momma. Ruth called my Mommas name and asked Daddy if he could see her. He pointed over Ruth’s shoulder and said …over there”…

Ruth continued to hold his hand and talk to him. He mumbled a bit, but neither of us could understand what he was trying to say. She asked if he knew where Pauline was. He pointed toward the foot of the bed where I was sitting. She then asked if he had anything to say to me.

No response.

Ruth began again telling him it was OK to go, his work here was done. He should take Momma’s hand and go walk with her.

I just sat sobbing as I watched. She told him my mother and my brother were both waiting on him. It was time he should say good bye to me and go be with them.

She spoke to him a few times more and Lewy drifted back into sleep.

It was getting late and pretty dark and stormy. Ruth apologized for staying so late. Really, no apology is necessary. None at all. If nothing else she forced me to start dealing with him leaving me behind. And she made him smile. Really, no apology necessary.

As Ruth was making her way out, Lewy woke up and told Hubbie he had just seen the most beautiful woman he had ever seen in his life as he pointed to where he had seen Momma.

Whatever you did, thank you Ruth. I hope Momma is there waiting on him. Their fifty two years together was not nearly long enough.

3 comments:

kddove said...

Again, i apologize for comparing my doggie to your daddy... but that's what i was doing with lucy... telling her it was ok to go if she needed to... i told her that for a few weeks and a lot the last night. i told her thanks for everything and that i loved her more than anything in the universe, and if she needed to leave, i understood. and she finally let go...i guess it may have been silly to talk that much to a deaf dog.. but i know she understood.

Stella said...
How perfectly beautiful. It could make you feel as if you were also in the presence of Momma.

This from Stella, a staunch conservative.

old friend said...
another one of those WOW moments, Pauline! I am so thankful for the body that makes up Hospice.

(((((HUGS)))), tears, and laughs,
old friend

Talk to Me...Somebody...Please

2008-05-02T23:25:00.000-05:00

Daddy slept all day except for enough time to feed him and give him his pills. He has always been a very loud snorer, but now that too is gone. His breathing is heavy and somewhat labored, but mostly he is pretty quiet.

Today was a wonderful day for me. I had an old friend and his daughter visit this morning and before they departed an even older friend arrived. She is living in Texas now, but hopefully soon she will be living back home here in Tennessee.

As soon as she left to go collect her husband, I left for a late appointment with Serita my hair stylist for a cut, color, moustache and uni-brow waxed, and over all yak it up session.

After that wonderful time I went to the new “outdoor mall” and found four blouses I felt the need to purchase; stopped for take out sushi and headed home.

Oh; it was good to have a day with friends. I needed the mental break. With Lewy in the sack ‘round the clock, there’s not much to do to comply with what his new nurse said; “Your job is to keep him comfortable and safe.” Unless the house catches fire, these tasks are pretty easy.

It’s the entrapment that is hard for me. When ever I get the opportunity to leave I feel like I’m sure our puppies do when we let them out to run. Just like Lyla, I run and run until I can’t run no more. Sitting here alone in the woods with Lewy can get pretty dull. I’m getting to where I want to nap in the day, rather than find something productive to fill my time.

When I finally came back in, we ate our sushi treats and sat down in front of the TV.

Lewy is still sleeping. He hasn’t moved in hours, maybe all day. I know I’m supposed to be turning him, but it hurts him so, and he is so peaceful when he is asleep. When he is awake, he rarely is Daddy, almost always Lewy, and always seems to be in pain. I don’t see the benefit in disturbing him so much. I really don’t think there is a lot of time left for developing sores.

Lewy is forgetting how to eat. Sometimes that mouth opens and other times Lewy sticks his tongue out, not playing, but just doing it wrong. Even the baster is becoming a bit more difficult, but still the best thing yet for giving him liquids. Everyday he takes in just a little bit less food and drinks. Even two sips of water get a negative reaction from him.

Friday is to be a busy day; Nurse’s aide, Nurse, Doctor’s appointment, Hospice councilor.

Another whole day of being around people who can actually talk.

How pleasant.

1 comments:

spouse said...

I was just informed that there is a pad that will move air within it,in constant rotation, so that people who do not move while sleeping can avoid bed sores. I will be receiving more info about it soon.I will pass the info in asap.
I am also learning the value of several kinds of therapy. Shopping therapy worked very well 'till all my closets, drawers and shelves became over crowded. (I have not learned throw away therapy yet.)
Conversation with friends is the best therapy, whether in person, on the phone, or e-mail. Garden therapy is great too. Tho my nail girl frowns at the soil around the edges, I'm elated when I notice that the radishes and arugula lettuce I planted last weekend are already up ! Knitting therapy was good last year, and I know I'll go back to it eventually "cause I'll need to use all that yarn I bought in shopping therapy. You have become a very important part of my therapy also. I'm sure I'm not alone there!!! And you are not alone either--- we are all in this with you and each other---
Di

Letters

2008-05-01T23:23:00.000-05:00

I just wanted to thank you for the information on the blog
My poor mum is in the last days of her life, with LBD having suffered a few years
I am so so sad that I can doing nothing to help her, she no longer eats, has not spoken for three weeks and is lying in a hospital bed, very very sleepy, her finall intravenous fluids ran out last evening and the staff have stated there will be no more given, she looks so ill, her lips are so dry and her skin so pale, I fear the end is almost upon us and I wanted to educate my self for the final dread.

Thank you once more

best wishes

Mark
http://swimmingthechannel2008.blogspot.com

http://justgiving.com/markrobsonchannelswim

------
Thank you Mark. I needed the information you gave about the last days. It is so hard to get any definate answer about the timing because LBD is so poorly understood.

All- Please check out mark's web sites and if you can donate to Mark's fundraising page. J-A-C-K (Joining Against Cancer in Kids) is a newly formed charity, to benefit the fight against Neuroblastoma.

We want to find the cure Neuroblastoma. Lives are being lost now to this awful disease and the cure could be around the corner. We want to hire a scientist in this country (UK) to prevent kids having to travel to the U.S. for life saving treatment.

What a wonderful effort. Again, thank you Mark

Pauline

Lewy Comes out of the Closet

2008-04-30T21:47:00.000-05:00

Hubbie here.

Saturday after my conversations with Lewy I had a fairly productive day. I prepared a delicious ground beef quiche for dinner and then I began work on Lewy Daddy’s closet. We must be honest with ourselves, Lewy is going to have no use for Daddy’s clothes. Pauline and I are honest about such things so Saturday afternoon I began the exploration of the closet. I don’t know how else to bring it to you except as a blow by blow account……….that will make sense later.

First let me say that old men are lousy at hanging up clothes. No shirts were buttoned and there were more pants on wire hangers than there were shirts on pants hangers. But there was cool stuff as well. Very cool stuff. There was a map of southern China and one of Taiwan printed on opposite sides of a piece of linen. We (meaning Pauline) noted that the printing was to save space and the linen was to avoid the map being damaged by water. The maps were marked “RESTRICTED” but we figure they are pretty safe now. (Just to be sure let’s keep that between us. Nobody tell Dick Cheney.)

I found enemy plane identification cards from WWII. They depicted Japanese planes. There were two views of each plane…….first..OMG they are coming at me….and second…..OMG they are on top of me. The cards formed a deck of playing cards but they had been pasted in a scrap book. Most of the cards had been torn out of the scrap book and only two pages remained. Upon seeing the cards Pauline remembered them and had to confess that as a child she had played with the cards so she was the one who tore them out of the book.

I found certificates where Daddy crossed the international date-line………….twice. I found copies of his discharge papers. (Several copies in fact. He always was a savvy camper.) There was his uniform name tag from the Navy. There was his dogtag. It was a simple single thin metal plate; nothing like what you see in the movies. Very cool stuff. All of the Navy stuff plus a couple of watches and a pocket knife went to Lewy’s grandson. Grandson is a “the third” so we call him Trey. Trey served in the first Gulf War. Daddy was very proud. He was even happier when Trey returned.

I cleaned up the Yamaha keyboard. I loosened the strings a bit on the three acoustic guitars to relieve the stress on the neck. Daddy was a self taught picker and quite good. I know enough chords to play a few songs (that’s a requirement to live in Nashville) so I’ll hang on to one guitar.

So I hung up all the shirts and straightened the pants. I sorted out the thirty-seven pairs of suspenders, eight pairs of shoes (yes one pair was white) and the four cowboy string ties. That stuff will go to Goodwill. If they ship it to a Florida store it will probably sell well. Where else are you going to sell a pair of dress short pants. I swear, pressed black wool shorts with bright brass fittings. The only thing missing was they weren’t cuffed. There was a tuxedo shirt too. I’ll bet you money he wore them together.

Sorting out the boxes of photo albums and souvenirs of cruses and vacations I came across a box that puzzled me. It was not a box from the distant past. It was obviously fairly new, not more than three or four years old. It was 4” by 10” by 12”. Large letters on the outside read “Vacuum Therapy System.”

“What in the world it this?”

“It must be medical but I’ve never seen it before.”

I turned the box in my hands.

ACME medical technologies, inc.

I opened the box and found what appeared to be a traveling case. Inside the case was a large plastic cylinder and a toothpaste-like tube. The label on the tube read “Personal Lubricant”.

WHAT!?!

I opened the instruction booklet and…………..OMG.

It’s a penis pump!!!!

Seven thousand thoughts surged through my mind. Sixty-five “Oh My God”s. Two Thousand Seven Hundred “Has it been used?”s. Three Thousand Four Hundred and Thirty “ Did it get washed afterward?”s. And then another Eight Hundred and Five “Oh My God”s.

Then I started laughing.

Of course I shared the story and the contents of the box with Pauline and we both laughed.

Then I got curious.

No not that way!!!!! OMG!!!! I’d have to sterilize it first.

No. It was this way. I Googled for the product in question and I found it.

The “ACME External Battery Vacuum Therapy System is available for sale NOW ON SALE WITHOUT A PRESCRIPTION!”

No Prescription Required!............You mean I don’t have to have my Doctor say that it is OK to have a machine su….uhhhmmmmmmmm………..perform oral sex on me!???!!...............A MACHINE!!!!.....................a battery operated vacuum cleaner!!!…………a nutbuster!!

Thank God………….I thought maybe Bush had finally gone too far.

I learned on the website that the contents of the box included the pump, the lubricant, and an instructional video. Hmm! There was no video in the box in the closet. Hmmm.. I never saw Daddy use ours or any other VCR. Someone else had to have done it for him. A girlfriend? No doubt a close girlfriend. Maybe even a little kinky since she seems to have kept the video. Hey! Maybe after watching the instructional video they didn’t need the pump.

There was other fun info on the site.

“new combined pump and cylinder for one-hand operation”

Well, after all, that is the traditional method.

“sleek, angled shape for better, more comfortable grip”

Comfort is important. Not so sure about that angle thing though.

“new contoured cylinder with finger grooves for easy transfer of tension ring”

Tension Ring? Tension Ring!!?? Transfer of Tension Ring!!??!!!!???

Trust me when I say I that I will not be trying this machine on for size. The instructions are as follows:

Step 1
A tension ring is loaded on the vacuum cylinder. The cylinder is then placed over the penis.

Step 2
Hand pump removes air from cylinder to create a vacuum. This causes the penis to become fully engorged and erect.

Step 3
Tension ring is slid to base of penis to maintain erection, vacuum is released and the cylinder is removed.

Read step 3 again……………. Yeap that’s what it said. The penis in question is now a balloon. Do you suppose that when the balloon is released it makes that raspberry noise of a balloon flying around the room?

Hmmm………you know….that might be the best part.

Then there was this rather disturbing thing on the web site. I know they sell other products but this seemed really out of place…………………………………………………

"Save 10% on a great present for Mom on Mothers Day!" Complete with flowers and butterflies.

4 comments:

Anonymous said...
That was by far the best one. Now I got images that just won't leave my, pardon the pun, head.

Hubbie's P.C.

pearose said...

I know there is yet another Dick Cheney joke in there somewhere, but I'm backing waaayyy off!

I wonder if Goodwill will ship that to Florida, too. Perhaps as an accessory with the tux shirt and dress shorts?

Anonymous said...

Stella here. This is why I spend my time discarding. Oh! The trail we leave behind. I have been discarding things and also, as with Mr Daddy's war time cards, I have found that I did not keep the valuable and sentimental mementoes that S/SGT. Edward sent home. I was taking care of a family and if a child found a treasure to play with, I didn't stop her or him. Too bad. I am trying to get things in a semblance of order for the kids to enjoy. I hope I keep and throw away the proper things. I can only imagine the things Edward would have accumulated had I gone on before him. Our children would probably have had a field day going through his closet!

Karen said...
Hi Pauline and Hubby,

Karen here. Don't forget to keep the discharge papers to show the funeral home. Then you get a free flag to drape his casket. When my dad died, as I recall, there was also a veteran's benefit toward the funeral/casket. I think it might have been $200.00. 13 years ago, so don't remember perfectly. Dad was a tail gunner on a B-24 out of New Guinea. He also crossed the International Date Line on a ship when he came home. I always liked the certificate with the illustration of King Neptune on it. Mom contacted the VFW and 3 or 4 old veterans came to Dad's graveside service and fired off a salute after a recording played taps. It was very touching. Mom sent the VFW $100.00 donation afterward. I think dad was a member, though he never went to the lodge.

Funny essay, Hubbie, on the vacuum pump.

Hang in there. I think of the three of you each day.

Saturday Morning with Lewy

2008-04-29T22:17:00.000-05:00

Hubbie here.

It was Saturday morning and Pauline was sleeping late. Actually I slept late too but she is sleeping later. I made coffee. While pouring the water in the pot I made eye contact with Lewy. It was Lewy because his voice was loud and clear.

“Do You have a pocket Knife?”

“Yeah. Somewhere. Why?”

“Didn’t you hear it?”

“Hear what?”

“That fart”

“The fart?”

“Yeah.”

“No. I missed that one.”

“Well it was a long one.” Raising his arm above his head Lewy got a huge grin on his face and continued. “It started way over here” pointing to his right, “and wound up down the road way over there”, his arm stretched out in a long arc moving across to point out the window. “I was in June’s driveway at the time and she umm grumple zima duble non.”

“She what?”

Still grinning Lewy replied, “I’ll tell you about it next time.”

“OK. Want some water?”

“Yeah.” I went to get the water and Lewy called me back.

“You know we had two blow outs and then there weren’t no bricks left anymore.”

“Hmm. That’s too bad. I’ll go get the water.”

In the kitchen I got Lewy’s water and poured myself some coffee. I looked up and he had raised his bed sheet high in the air. He pulled it up and laid it down over his face. With one hand he washed his face with the sheet, groaning loudly the entire time. As I got back with his water he pulled the sheet down and pointed to the ceiling near the door.

“That was the frequent sound.”

“The frequent sound?”

“Yeah. It sounds just like that. You can just imagine that coming on and running for five minutes.”

“Yeah. Here’s your water.” While Lewy drank from the turkey baster I wondered if sometimes when he moans that, to him, the sound comes from outside himself. That would at least explain why it was a frequent noise. With one cup of water done, I went back to the kitchen for another. As I got back to Lewy’s bed a large truck went by on the road below the house.

“Someone’s here”

“Nah. It’s just a car on the road.”

“Up on the mountain?”

“Well, actually a little below us but …………close enough.”

“Nobody farted then.”

“I guess not.”

“Except for the beginner.”

“Yeah? Well they do need to practice. Have some more water.”

Lewy finished the water and I wiped his face. He looked at the towel and then at me.

“Is the end of that towel about half wet?”

“No but it could be. You want me to wet it for you?”

“No, I just wanted you to know in case you ran into it.”

“Thanks. I appreciate that.”

5 comments:

kddove said...

my louie (lucy) passed on this morning. 13 days away from being 18 years old.... gone on to doggie heaven, i suppose. can i go with her?

Hubbie said...

I am so sorry to hear that kddove. Even at that age it is tough to say good-bye. You must, however, stay here and, at some point, find another puppy to save and to love. Lucy would like that.

Anonymous said...

Stella here; Kdove I, too, am sorry to learn of your loss. It hurts, doesn't it? But my, so many wonderful memories. I do hope Mr Lewy's four legged friends will stay around with him for a while longer. I know you feel the same.

pearose said...

kddove,

So sad. My vet swore to me that my lost one would be at the Rainbow Bridge and I'm holding her to that, because I want to see my baby again. Hopefully, you'll see yours again, too. It makes the separation bearable. Fortunately, I have three best friends still to care about. I hope your pain eases quickly.

Pauline said...

Geez. I'm really sorry kddove. I still occassionally tear up over critters I had 30 years ago. Lucy is no longer in pain. At least there is that much.

Rollin' and Tumblin'

2008-04-28T22:05:00.001-05:00

Lewy had been sleeping all day until just a few minutes ago, when he woke up and became very alert. He started talking to me, all in mumbled up jumble. I squirted his mouth, which he welcomes. It helps him talk a bit better. “Are you hungry?”

“No.”

“Are you thirsty?”

“No.”

“Don’t you want anything?”

“No.”

“How ‘bout if I get you something to drink?”

“No.”

I got him a bottle of Ensure, chocolate flavored. After he quickly took the entire bottle from the turkey baster, he said he had to spit.

OMG! My stomach! Hubbie is asleep…Ohhhhh…Daddy starts coughing up the phlegm. Hubbie had laid out several separate folds of toilet paper for such emergencies. I went through the entire stack. The phlegm just kept coming and coming. I would shut my eyes, tell him to spit and hold the paper. I could feel the warm globs through several layers…each time it seemed like the globs were getting bigger and bigger. I’m gagging. There comes a point where I have to go stand on the porch and breathe some fresh air.

After he thought he was through with that for a while he took some water and two spoons of yogurt with his pills crushed in them. Then more water to kill the bitter taste. During the drinking of the water Lewy said “You wouldn’t know it if you saw it.”

“What’s that?”

“The big magnet; the one that holds everything up.”

“The magnet?”

“Yeah, you’d have to be an engineer to be able to see it. There are all these particles, these things and they all go to it.” Everything goes to it”

“You mean the big magnet that makes everything fall?”

“Yeah.”

“You mean gravity?”

“Yeah, you can see it. It’s everywhere. The particles are everywhere too, all going to the magnet”. The particles all glow.”

“You can see gravity?”

“Yeah.” He looked at me and grinned real big. “Yeah, I can.”

“That’s cool…but it’s time to roll you over.”

Hubbie came over and we straightened out the pull sheet and the pee pads, changed Lewy’s diaper that now is just stuffed up under him to catch drainage. There is still some, but the antibiotic must be doing the job, the stench is almost gone. Only problem is, he is not eliminating.

I got on the gloves, left hand first, and pulled the plug to insert the irrigation gun. “Water” squirted out. Ha Ha! I had on my gloves! You did not get me this time. For some reason though, I thought I could set down the open tube while I went to get the gun and the saline solution….WRONG! It was draining out all over the pee pads. I got the irrigation gun in the hole and started pushing. It was harder to push this time. When I got ¾ of the way down the tube, it sprayed back out at me. In this case, gloves did not matter…..

Again it was deemed time to roll him but his right foot and the sore was exposed, so I decided to peel off the bandage, clean the wound, and redress it. OK, Now It was time to roll him and he was saying he was hurting. Hubbie got on the side Daddy was facing and I stood on the receiving side.

Hubbie started to lift and roll. “Stop!” Catheter bag…Once I got that repositioned, then we started the roll again. “Stop.”

I noticed Daddy’s but was needing cream. So I got the zinc oxide cream that is so incredibly thick and smeared it all over Daddy’s butt.

“I need to shit.”

Hubbie responded “Well do it now.” Daddy responded with a series of farts. I responded by turning on the ceiling fan.

We waited a bit and nothing happened, so we rolled Daddy over and got the king size pillow up under him to keep him in place. I then cleaned and dressed the other foot, repositioned the catheter and Hubbie and I covered him up. He should be going to sleep soon. This episode of being awake was lasting pretty long for Lewy.

Hubbie went to bed; I was turning off lights and getting ready to go mess with the computer when Lewy announced “I got two!”

“You got to what?

“I got two!”….“I got two turds!” (in his best New Jersey accent).

How Slow am I?

2008-04-26T22:03:00.000-05:00

Hubbie stayed home today, to help me out with Daddy. It turned out to be a good thing too. Summer, our nurse’s aide was back today after having been out for the funerals. She washed Daddy, shaved him and washed his hair. He was semi comatose the whole time. He couldn’t hold his eyes open.

The three of us used the Hoyer lift to lift Lewy out of the bed into the chair for a few minutes. He managed to tolerate sitting up just long enough for us to strip and remake his bed. We lifted him out of the recliner back onto the bed, and while adjusting his position Summer noticed and showed me where indeed Lewy was leaking out of his cathetered penis. Where he ripped the catheter out with the balloon still blown up he slit open the inside of his penis, no doubt the entire length and possibly back to the bladder. The pee is still very rank. Smells like a UTI to me.

So Summer called Nurse Goodbody to see what to do. There was the general clinical description over the phone. Nurse Goodbody would talk to the doctor and call me back. Summer instructed us to be sure to roll him completely over from left to right to center every two hours. His skin is breaking down again. The rolling bed was not enough to prevent him from putting pressure on all the same spots all the time. We wished Summer a better weekend, and she was on her way.

The Hospice counselor came by a bit later to sit and talk about Life, the Universe, and Everything. As we talked, the nurse called back with orders for me to irrigate Daddy’s bladder. I had watched her do it before so I kinda knew the routine. I was to go do it; and she would call back in 15 minutes to see how it went.

I went in and put a glove on my right hand. I pulled the little grey stopper out of the input tube, and pee (or something, I choose to think pee) squirted all over my left hand. Alrighty then. After washing up I put another glove on my right hand. Shows how inexperienced I am. No it didn’t squirt the second time, but I’m right handed so the hand with the irrigating gun was…duh in my right hand, and again my left is touching things that only a glove should touch.

I have managed to brush out his mouth, bathe, dress, feed him, wipe up blood, clean up shit and stinky pee, and irrigate his bladder, …but still the mucus in the throat just gags me. Today Lewy was barely awake, mostly non responsive, but coughing up the phlegm. Fortunately Hubbie can take it……I can’t. I just have to leave the room.

Lewy slept pretty solid until about 9 PM. When he woke up he said he did not want anything to eat or drink but ended up drinking a glass of grapefruit juice and eating an entire can of Bean with Bacon Soup that had been pureed and a half “cup” of butterscotch pudding. Normally I’m faster with the baster than Lewy is with swallowing, but because the soup was pretty thick, it was not coming up in the baster very fast. As I held the soup bowl close to Lewy, to minimize the drips, he raised his head ever so slightly stuck out his tongue and started to lick the outside of the bowl. I told him to hang on I was being slow.

He opened one eye, sort of gazed in my general direction and said… “You’re slower than stink off of shit.”

“Thank you very much.” – As I squirted his mouth full of soup.

He has taken to waving his hand back and forth to indicate “No”. He started this a year or more ago to the puppies to signal no to them. They never understood it. I guess our dogs speak regular English rather than sign language. Never the less Lewy uses this signal on us. Perhaps he hopes we are smarter than the dogs, but so far we too have ignored this command and continue feeding him. Perhaps it’s the mixed signals, waving no with his hand, while holding his mouth wide open - tongue extended - waiting for the next squirt from the turkey baster. That is until he drifts off into Lewy Land.

There is no eating or drinking in Lewy Land. Only sleep and hallucinations that he can not distinguish from each other.

I believe he is taking that next step down. I only wish I knew how many steps there are in this flight.

1 comments:

old friend said...
don't you just hate it when there are no words that are adequate to say all the things you want to say...that's me right now...

No Summer Today

2008-04-24T21:59:00.000-05:00

Today was a beautiful spring day. The redbuds, crabapples, dogwoods, and the cherry trees are all in full bloom. With the temperature in the upper 70’s, I opened all the windows to air out the house. Daddy was obviously warm, so I turned on the ceiling fan.

There was something not right. I was not sure what it was…the cat box was clean….garbage was not smelly…didn’t smell like a skunk…

The nurse’s aide came in Summer’s place today. I guess Summer is no doubt attending funerals today. As she walked up, she was admiring the large ornamental cherry out side Daddy’s window, all full of smiles…then she walked in the house…I saw her nose crinkle up….Humm...it wasn’t just me.

I knew Daddy was a bit stinky, but it had been since Friday since he was bathed and it had been a tad warm. As Audrey proceeded to bathe Daddy, we quickly discovered what the smell was. Even though he has in a catheter, he managed to pee all in is diapers. Enough so that the two pee pads under him were soaked and the sheets under him were wet.

I had noticed the catheter bag didn’t have much in it, but I could tell there was pee going down the tube…It never occurred to me that he could pee like that. Audrey called Nurse Goodbody. She will be here first thing in the morning to see what’s up with the peeing.

We did the roll him over routine to pull out all the soiled linens. OMG! The smell was awful! I turned the fan on high. I could not get to the trash pail fast enough and to the washing machine fast enough. It was truly awful.

Even with all the windows open and the fan on high, the smell lingered. There must be something else going on with his kidneys or bladder for pee to be that rank.

After his bathing and the immediate removal of the trash bag with the toxic waste in it, Audrey was gone and Lewy was semi comatose. He’s been that way all day today.

My Life with Bill Clinton

2008-04-23T21:56:00.000-05:00

I don’t know why I think days like today are different, but for me, mentally anyway, they are. The only difference really is Hubbie is traveling over night. I have always enjoyed my “alone” time. Now days there is no alone time except when Lewy is sleeping.

So today, I thought I would finish up my office work early, get the trash taken out, do some house cleaning, then I could have some “me” time. All that was necessary was for Daddy to sleep. I noticed recently, that he seemed to sleep uninterrupted for about 24 hours if I gave him his Seroquel. I had even switched his dose to a half dose and was giving it to him at bedtime to assure a good nights sleep. So far it had worked every time.

But not today. This morning I feed him and gave him as much fluids as he would take; about a normal full day’s worth. Then I crushed his meds, including a full day’s dose of the Seroquel and fed them to him with some Banana Crème yogurt. Lewy has been awake all day.

Lewy has a special knack for waiting until I’ve started working on something, especially office work, to then start talking to me. Time after time I get up and go see what it is Lewy wants. Most of the time, he can’t recall why he hollered. Some times he insists that it was me that hollered for him.

This afternoon, while I was cleaning up in the kitchen, Lewy had me drop what I was doing to go stand by his bed to hear the question….”Ain’t that Bill Clinton standing there?”

I had to turn to look….

“No, Pappy, I don’t think so. The Hilldog has a tight leash on that puppy.”

“Well it sure looks like him.”

……“Yep, your right, he does look like Bill.”

Back to rule number 1. Never argue with a person with dementia. It is pointless. Hubbie takes it on a fun challenge. I get frustrated after about the second sentence.

I have fed Daddy a second time today, blended pork tenderloin and turnip greens, butterscotch pudding, and a root beer. Pretty yummy actually.

He has finally fallen asleep. Yeah! Me Time! Check y’all later.

4 comments:

Anonymous said...
I'm having to post on anonymous...can't seemt o get the pass word right for my ID?

Just wanted to say enjoy your "me" time Pauline, you deserve it.
Dee

Anonymous said...

After 40+ years of being married to someone who traveled, I did get used to Me Time also. His retirement was a challenge, but nothing compared to Lewy Time, in which 15 minutes of Me Time is about max. Yes, it is difficult to produce when interruptions come mid-sentence. Don't stress - we understand. It may help to realize that he really wants is your company, and misses the Together Time that you once had.
Di
I'm still having trouble with the password thing also.

pearose said...

Maybe you have discussed this subject, but Seroquel is a very controversial drug for dementia patients and has caused many problems for the elderly. Has your doctor talked to you about any of the side effects? It may be one of the reasons your Dad won't look to his right side to view the outdoors.

Just curious...

Sammie Jo Mitchell said...

Dee and Di;
I am sorry you are having issues with the comments. Blogger is acting up lately more than it normally does.

Have you tried clicking on the "Name/URL" button? You can then just type in any name you want. There should be no passwords on that button.

Thanks for reading and commenting.

Hard Morning

2008-04-22T21:51:00.001-05:00

Our nurse’s aide did not appear today. Her best friend was killed in a motorcycling accident on Sunday, and she had a patient die on Sunday. I don’t know how Hospice workers deal with death all the time. It’s bad enough to have it in your professional day, but when it gets personal on top of the professional, it must be very rough going. I could never have enough intestinal fortitude to successfully function under such circumstances.

I’m not really functioning very well just having my own little set of issues. It seems so trivial to think of my situation. I’m lucky in so many ways. But my brain is doing weird things. I know I’m teetering on the edge of a bout with depression. So if you know what it is - can you stop it from happening? Or is it just going to happen if the current situation drags on?

Now I feel guilty for the “drags on” phrase. I do keep thinking of Dr. Cutie Pie, and hope for tomorrow. Then I feel guilty even more. It is a vicious spiraling whirlpool sucking me under.

Daddy announced today that he needed to take a crap. Fine. Perhaps I should try to hoist him up and let him sit on the potty chair. Lewy thought it was a good idea anyway….

I hooked up the lift pallet; unfortunately Daddy was not centered or properly positioned to have his rump positioned to where he could use the potty seat. Silly me, I lifted him pee pad, diaper and all. I tried cutting him a hole…No, that does not work. Don’t even bother trying. It just makes a mess of internal pee pad and diaper fuzz all over the place.

I lifted him back onto the bed and did the roll over routine. I got out the old diaper just in time to see my dear old Dad’s loose muscle anal opening flap like a cartoon when he let loose some… “Wind”.

I opened the window next to his bed. Thank goodness for warm days. More wind... Now all I needed was a breeze.

As I stood back waiting for Lewy to finish, I noticed that he had crapped himself a tiny bit. This was not particularly fresh either. It had clumped into tiny radiating lines of hard poo. I sprayed him with the butt cleaning fluid and wiped. Still more there. More spray, repeat wiping. As I was doing this for the 3rd time, Lewy asked…

“Did you find anything to eat?’

“EAT!?!”

“Yeah, Did you find anything you could chew on down there?”

“No.”

Lewy was still wanting to have a bowel movement, so I thought, why not now? I have the pee pad out and the diaper off. I repositioned the lift pallet so it would catch his butt in the proper position for sitting and thinking.

The only problem was, I missed the proper positioning. Imagine now, me bent over looking up under my Dad’s butt as he was sort of hanging through the business hole of the pallet, still saying he had to go... Mostly the Boys were scrunched up on one side and his cheeks were squeezed together. If he had gone, it would have been like a Venturi carborator...forcing so much through such a small opening under intense pressure... Lewy's butt kinda looked like a rotten cantaloupe that had caved in on one side…and turned blue.

Scratch that lift and sit idea. I lifted him back into bed and got him situated and comfortable. Within seconds he was asleep. It had been a hard morning.

5 comments:

pearose said...

Walk. Take Lila and Tweak out on leashes to train them for your upcoming city life routine and city walks. As you walk, feel your heart rate increase and your body respond to the challenge - it will make you feel ALIVE! Walking relieves the symptoms of depression. You live in a beautiful country setting that begs to be walked and enjoyed.

Take advantage of the time when the hospice crew is there and use home health services on the off days. Please. Do this for you.

Stella said...

You know, Pauline, I hang onto your every word and at first you made light of even the terrible things. Did I inadvertently drag you down by wanting/needing more? If that is true, then it is time for a change. The blog does not need to be about every move our Dear Mr Lewy makes, how about either writing once in a while or if the mood strikes, tell us what someone else in your life did that make you happy or another emotion. Remember how you felt? How you laughed? Or a teacher that did strange things, or something that happened on the way to church. I'm laughing now about a family who lived down the road from us. It was a family of three girls and one brother. Some of the things they did to that poor little boy... He had on a pair of white starched trousers... stiff as could be ... his mother wanted him to be pretty for the "Sword Drill". those girls told him if he sat in the car the pants would break. He walked the mile to church up and down the hills and around the curve and over the bridge. He did arrive in time with the giggling girls waiting for him. How cruel was that????!!!!

Pauline said...

Stella...How could you have possibly brought me down? It's not your butt I'm looking at ;-) I think we both are greatful for that...

I thought I had fairly successfully made light of a "dark" situation. ;-( Perhaps not.

I am fine. Some days are better than others. Thank you both for your concern, but really, I am fine. I'm mostly just stir crazy.

Stella said...

You didn't check me for pin worms with a piece of scotch tape and a flashlight, but if I ever need that done, I know who to send for. You're the Pro!

Pauline said...

LOL. I never knew that was how that was done! Good information to know. You just never know when that will come in handy.

Perhaps I should get me some tape and a flashlight and go seek out people who are scratchers...

Stella, U R 2 Funny...

Getting it Done

2008-04-21T21:49:00.000-05:00

I have not posted in a couple of days, it seems. Maybe it’s been only one. It’s hard for me to tell what day it is sometimes on here. You write on one day but post the next. Perhaps it’s just getting harder to find something to say.

Lewy sleeps all day and all night. At least the last couple of days when he has been awake, he has been hungry and thirsty. It seems like he is taking in so much more food and fluids until you actually add it up. It just seems like a lot compared to the nothing he takes in on “bad” days.

I’ve taken to giving him his regular pills, which includes Seroquel at night. I’ve noticed that his normal meds just knock him out….All this time…3 years or so now…perhaps; I’ve just been putting him to sleep every day by giving him what the Drs. ordered. Who the Hell knows….

It’s very frustrating on so many levels that I am (we all are) dealing with the dementia and a long slow death, but that we have no clue about these drugs. Just like that gynecologist told me, before he almost killed me with drugs…”don’t be a silly woman, take the pills…”So I know from first hand experience, drugs and Drs are not necessarily what they are cracked up to be.

But this time it’s not my body, and I can’t feel what they are doing to Lewy. Lewy did refuse food for a while on the grounds it was making him drunk. No doubt it was the meds. I quit giving him his meds with his food and he quit complaining.

Several of my girl friends have come by to see me lately. I must be exhibiting the outwards signs of social neediness. One of them, a high school classmate also has her Mother to care for. (She is in early stages of dementia.) When she came by, she stopped at Daddy’s bedside and stroked his hair and his forehead ever so gently. She leaned over looked him straight in the eyes and talked to him. I stood in awe of her ability to communicate to Daddy who she was. He was fixated on her. He watched her every move.

Then my friend leaned over Daddy kissed him on the forehead and said “I love you.”

He said “I love you” back.

It was so simple. So easy. Perhaps my friend (also named Pauline) was just showing me the way.

Perhaps she was standing in for me. Getting it done for me. At least I heard those 3 little words, even if he was looking at her.

1 comments:

Stella said...

And who's to say, in his state of mind, that he did not think it was you? Or that it was meant for you? I believe it was meant for you. A person cannot love another unless he/she feels love all around. He knows he is loved, you have made sure of that, so he loves in return. He does love you even if he, as my mother did, chokes on the words to you.

Stage Seven Blues

2008-04-19T21:44:00.000-05:00

Hubbie here.

I see by the ol’ clock on the computer that is 8:34 AM. It’s Saturday morning (Caturday for those of you who read LOLCATS) and the rest of the house is still asleep. My body stays on “get up and go to work” time most weekends and I can’t sleep really late. So it’s just me and the cardinal that likes to bang her head on the office window every morning. Is there bird dementia? Don’t know. I am glad that Lewy’s version doesn’t include throwing himself into the window every fifteen seconds. The bird is annoying enough and though Lewy has lost weight he still outweighs the bird by at least 150 pounds.

Long time readers know that I don’t post as much as I used to. (Funny. It seems like a long time but it’s been less than 4 months.) Stage seven LBD is just not funny. There are moments. This morning I made coffee and Lewy made noise. I approached and he had is eyes almost open. I asked if he wanted anything.

“Yeah I need a quart of water.”

“OK. Would you like me to check your oil too?”

I smiled. Lewy stared. When I got back with the water he was sound asleep.

The curtain falls and time passes.

Lewy called and has now had the glass of water plus a glass of diet coke and a glass of buttermilk. He was very specific about the latter.

“Not sweet milk. Buttermilk!”

“Yes, Sir.”

Sweet milk, for those of you not around here, is whole milk. Old time southerners only believe in sweet milk and butter milk. Low fat milk is does not come from a cow. And Soy milk? Well that is obviously a sign of the End Of Time. In fact, I believe that if you look closely in some of Bosch’s paintings some of the demons are drinking soy milk. I have been allergic to milk fat all my life so to me they all taste like water with mucous added. The only difference is the ratio of water to mucous.

I now pause for Pauline to get her stomach out of her throat after reading that last bit.
------------

During the pause the dogs asked to go out, so we did. Pauline is no longer in bed so she is either in the shower or she has had her own private rapture. Knowing her religious bent I’m betting heavily on the former. Now where was I? Oh yeah.

Late stage LBD just doesn’t lend itself to humor the way the middle stages do. Lewy still has a way with words .

“I need some laundry over here!”

But they tend to be just random statements

“I’m trying to get this harness off.”

Not something you can build a story around

“Why do I always get this f***ing damned ol’ dodge?”

I thought that one was a reference to a car but Pauline assures me that it is a financial deal.

I do write some serious musings and messages but they tend to be for Pauline’s eyes only. It is up to her if she wishes to share them; maybe in the book version. I wrote one piece that was basically a collection of jokes and gave that one to her. It was titled A Priest, A Rabbi and A Lewy Walk Into A Bar. You will notice that you have not read that piece thus proving that Pauline is not only a pretty good writer but a Pauline is a wise editor as well. I’ll try and conjure up an image from the past to share with you; something to provide a break from the stage seven blues. In the mean time I leave you with this. It’s not a joke. It’s a true story. So I’m told.

I rear-ended a car this morning.

So there we were alongside the road and slowly the driver gets out of the care and ……………you know how you just get soooo stressed and life seems to get funny?

Well, I could not believe it!! ……….he was a dwarf!

He Stormed over to my car, looks up at me and says. “I AM NOT HAPPY!!”.

So I looked down at him and said, “Well, which one are you then?”

That’s when the fight started.

1 comments:

pearose said...

You're too funny for words, so I'll just sit here and laugh at your wit.

TGIF

2008-04-18T21:36:00.000-05:00

It was a bueatiful spring day today. Daddy’s bed sits in front of the living room windows where he has a view of the yard, the woods and the near field. Lewy might actually enjoy the view if he would ever turn his head that way and look out. Even when someone suggests to him that he should, he just won’t do it. Stubbornness? Parkinsonian issues? I sure don’t know, but it is strange he will never look over to his right.

Perhaps it’s because of the things flying over his bed. The ceiling people apparently are pretty interesting. They are always up to something. Always mischief. They like the ceiling fan.

After the slime assault, Lewy settled down somewhat and drank a good bit of water and agreed to eat. A very large meal of 1 egg and the nub end of a baked potato – mashed up with gravy was the fare along with grapefruit juice and Ensure. Yummy;…at least Lewy was eating.

And then the spewing began again. I got him to hold a roll of toilet paper to pull off some as he needed it to spit on, then set a trash can right beside where he hand naturally rests. With the roll in his hand Lewy could not find the toilet paper. When he finally give up looking for it, he would raise the entire roll up to his mouth and wipe the globules on the roll. I don’t think he ever hit the trash can, but somehow having it there made me feel better.

He is in there now coughing up mass quantities of phlegm. The sound of it gurgling in his lungs and throat makes my stomach do flips. I stuck my finger up his butt and dug out shit. But just the thought of plegmn makes me green around the gills.

My girlfriends came over as expected. It was so nice to sit down and visit with someone else. I found myself yakking away a bit too much. It shows I need a tad more outside interaction. Someone to talk to that can formulate a sentence. I’m at the point where there is an easy path into depression. But having been there done that, I recognize the signs and believe that with effort I can hang on just as long as Lewy can. But beating back depression is a long long tough row to hoe.

You spend years getting to the bottom, and some how expect to climb out over night. I’m not doing the mood altering drugs. This sucks. It’s sad. I’m sad. I’m gonna cry a lot. There’s nothing funny about stage 7 LBD. There’s nothing to joke about at all. In stages 4, 5, and 6 laughing came easy and often, because the Lewyisms were at the least quite entertaining. There was not so much misery.

I think about Dr. Cutie Pie, saying if it were his father he would hope for tomorrow. And I find I do. I hope for tomorrow…not today…but tomorrow…because

After all; tomorrow is another day. (Sorry, I couldn’t help it,…and Frankly my dears, I don’t care if you give a damn)

…TGIF…

3 comments:

pearose said...

There is no way the people who care about you are going to let you slide into a depression. I'm glad it is Spring - that will help you. Ask for help when you need it. Even having a home health service out during the off-Hospice days will help you a great deal. Do what you need to do and ask help from others.

This is the toughest part of the toughest job in the world. I am so sorry that you're having to deal with such anguish.

old friend said...

((((((hugs))))) and giggles! We always have the best laughs....talk to you soon...I've been down that grey road and it sucks...we'll take a different fork...get ready, your sides are gonna hurt from laughing

Stella said...

This is not good. What can I offer from afar? Hmmm. Hubbie at one time offered you "time out" so you could run. Nothing beats running. Run until you forget why you are running and then return. Tired but refreshed. At least that is the way it is supposed to work. One child of mine was going through a bad time and she had trouble leaving for the gym in the afternoon but she lived where she could park her car and leave a child, entertaining himself, while she ran to get a new [badly needed] lease on life. One day she was returning, with tears streaming down her cheeks when she heard her son calling to her, "C'mon, Mom you can do it". That has become a mantra in our family, when things get hard. "C'mon, Pauline, you can do it" Go for a run or go outside down the street and sit. I am sending a big "Thank You" to that fun loving husband of yours.

Ectoplasmic Residue

2008-04-17T21:35:00.000-05:00

It is well established in our household that I will gag at almost any bodily fluid; especially those slimy gooey types. I’m gagging as I write. Yes gagging, literally, not figuratively.

As I approached Lewy to say good morning, I found him lying in a pool of “Ectoplasmic Residue” that had been deposited through the night. It covered the entire portion of his mid face ran down over the right side of his entire head covering his ears and hair in the clear stringy goo. It was pooled at his shoulders and ponded in large glops all over his pillow.

My first swallow of my morning coffee was not going down. Oh no… not this time…My natural gag reflex went into full swing. I was bent over at the hips head hanging down almost to my knees, my stomach started cramping with the result of dry heaving. For me this wretching continues yet still, over just the re-imagining the sight of it as I type. For Hubbie, he knew that the clean up duty would fall to him. He finds it extremely gross, but at least he can breathe through it all.

I had to leave the room. That’s all there is to it. If Hubbie were not here, I would have to call Summer, the nurse tech, to drop by first thing before she starts her day. She would understand. She witnessed me almost loose my cookies over nothing more than the spit from brushing his “teeth” (insert Tennessee joke that is “tooth” –almost true – he has 4). I wasn’t even expecting to gag over that - but it happened. Summer stood there thinking she was going to have to scrape me up off the floor just from a bit of sudsy stringy spit.

Bless Hubbie. He announced that he knew it was his job, yet he asked me to tell him what he was about to encounter as he was preparing to leave for work. He should know I can’t speak the words of goo without gagging through it. But the questions…Where? How much? What? The beginning of payback is in the questions…oh my stomach! Deep breath….breathe……breathe…

That was not what I was intending to write about today. But then….I can’t recall now what it was. In my brain slimy body goo takes precedence over all other matters.

Today I expect a couple of girl friends to come visit. For those of you that marked “I have no Lewy” on our poll a few weeks back…if you know some one with a Lewy; go see them. They can’t get out to see you. Their home has become their prison. Just as my home has become my prison. Yes, for good behavior I do get out on weekends (thank you Hubbie), but still it is a 24/7 sentence to have a late stage Lewy living in your house. There are no vacations, no running to the store, no spontaneous drives in the country. Even walking out to the garage is equivalent to leaving him home alone.

As far as Lewy is concerned if I’m not in eyeball range he will start hollering for me, just to see if someone is here. He can’t remember from one minute to the next that I’m in the office working or in the bathroom showering. Every minute is brand new. Just like a toddler.

We figure other than his speech; Lewy is at about 6 months old. He can no longer feed himself, and does not understand the mechanics of feeding. He blows the food out spraying it everywhere. The food must be mush and spoon fed to him. He gets the bib, and no way does he get to hold the spoon or the plate or his own glass. It would be slung across the room within seconds….. Now there- that is a difference in Lewy and a 6 month old. Lewy can, and will, throw things across the room. Way across the room.

Lewy can no longer walk. The interest in doing it is there, but the legs are not strong enough to support his weight. And his mind is so far gone, that like a 6 month old, he does not have the mental ability to figure out logically what is going on around him. When you watch babies, their eyes move all around like they are seeing things that are not there. So does Lewy. Only I know he is seeing something. Just what is another question altogether.

1 comments:

old friend said...

so happy for you to have visitors for yoself today, Pauline! Enjoy, laugh (deeply), and giggle! I'll be thinking on ya'll.

You are Just A....

2008-04-16T21:31:00.000-05:00

Never have a serious conversation with a person with Dementia. Especially if you are like me and tend to want to take them seriously. I’ve been struggling with saying my goodbyes to Daddy. Do I say them to him when he is as close to being Daddy as possible, or wait and just talk to Lewy?

Every time I give him food or liquids or go to his bedside, I try looking deep into his eyes to see who’s inside and practice my speech. I have progressed to the point I can now get through the first line without crying. Maybe by tomorrow I will be able to get through the second line.

Yesterday, or the day after the hospital run, Lewy was in full force. I could not calm him down or convince him that he needed to try to rest a bit. I’m not sure why I think he needs his rest. He sleeps 23+ hours a day, most days. What I’d really like is a visit from Dr. Cutie Pie to talk to Lewy and yell me what he really thinks. It’s so rare to find someone that might actually know something. (I bet y’all were thinking I’d like a visit from Dr. Cutie Pie for myself…no…no thanks…I’ve got the best I could ever have with Hubbie. And he is already house trained. Not many other husbands would go where he has gone and deal with the dementia the way he has.)

But back to practicing my speech. Every time I walked over to him I started in the process like maybe my mouth would actually open and the words would come out. Stubborn words, they just don’t come. How do you say those things to someone who has never said them to you? I was trained well by my Dad…never open up…never say what you think…never leave yourself open to attack…or rejection. So that has been my life. I’ve always feared the rejection. Its always the rejection. I can deal with attacks, but having been told how my brother was the favorite of us two, and with actions from both parents that supported that notion, it’s hard not to recognize the Big Rejection. The one from the parents, the one you never recover from.

So now I am here trying to over come this enormous hurdle of expressing my feelings…

I had thought perhaps yesterday while we were alone, that maybe I could work up the nerve to walk over to him and say what I need to say. I took him some juice. Then I tried the yogurt. Still nothing is happening, I just cannot do it. This feels like The Great Battle, the battle between Good and Evil, the last battle of the war. This war, unlike other wars, ends with everyone winning or everyone loosing. I try to imagine everyone winning, with me saying those impossible words and Daddy responding positively and perhaps maybe saying at least three of those words back. But I know my Dad. He will go to his death before he says anything of that nature to me. So I must be prepared for the possibility that if I can get my speech out that he will reject me one last and final time.

This morning I went in to give him some juice. He said he had something to tell me.

“You….are…the only one…” Here it is I thought…my mind raced… if he says it what shall I say? “You are the only one…that has come to visit….”

Visit?

“You are the only one, except…then he mumbled through some words …”the Coloreds”… and then some other unintelligible words.

“Coloreds?” Yvonne was a black skinned lady. Ever since she started coming over (but now replaced by Summer) he has had dreams about a black lady... ...he has several times lately, brought up “Coloreds” as his generation referred to black folks when they were being polite…

I think he must have done something in his youth to the black nurse he encountered (if she is real, and not a Lewy manifestation) during WWII that he has regretted his whole life. I’ve never heard any stories, but he probably would not have told on himself anyway…Never leave your self open…just what Daddy taught me.

I do know that having been reared by a red neck Tennessee Hillbilly and a North Louisiana back woods poor white mother, that if I ever used the “N” word, my teeth would have been knocked through the back of my head.

But I digress. I was trying to get out those unspeakable words and hope that some might return from Daddy that I could cherish the rest of my life. This is beginning to sound like Christmas, all the hopes and expectations, just to be disappointed in some one or something every year.

Even so, I was trying to find my spine and get in there to talk to him.

Then he called out “DADDY…DADDY! DADDY!!!!” He’s been asking for his Dad a lot lately. I think he is 17 or 18 years old working in the ship yards again. He is always worried about different pieces of steel.

I went to see about him. No, he did not want anything…No he was not hungry…No not thirsty…No not cold…

Then he said a few mumbly words…I went over to see what he was saying. Then it came out perfectly clear…

“I ought to just smack the Hell out you.”

“What? What did I do?” Was this Lewy talking to someone else?

No, it was Daddy talking to me. He was mad at me because I would not get him out of the bed, because I always had to have what I wanted.

“You are always trying to unnumunumin…” “You never unumunummin…” You are just a umnumnumun….”

I’m not sure what he was meaning, other than it was directed at me, and it was hostile.

4 comments:

3rd Wife said...
Relationships between parents and kids are like a kaleidoscope..always changing. Sometimes beautiful, sometimes just muddled.

I have a problem with the "3 words" as well, at least in regards to my parents. Sometimes I can write them in a card so that they can be read in my absence. But I can rarely say them aloud. It is such a sharp contrast to the relationship between myself and my own kids. I tell them I love them daily, and they do the same.

I think about those 3 words alot, and wonder how much I will beat myself up for not saying them aloud when I had the chance. I suspect that there will be quite a bit of self-abuse when the time comes.

Say the words..it doesn't matter whether you are talking to daddy or to Lewy. Know that you can't control his response, that you can only control your actions. Then rest a little easier knowing that you did it.

Stella said...

Oh, you dear, dear child. I want to hold you and hug you. Of all the stories you have confided to us, this is the saddest. We don't do things for praise. We tend to our family members because it is the right thing to do. For now, that has to be enough. You have done the right thing for someone you love. Maybe you were not a "perfect child" growing up---how many of us were?---but you have grown into a person everyone should be proud to have for a daughter. If you have not shown your love and obeyed the Commandment, "Honor your Father...." then it can't be done. Stay strong and for get the "talk".

old friend said...

powerful message, Pauline! This is about you now though and the window for Daddy to come visiting may never be opened again. You just have to do what you feel is right in your soul....for you. You've loved him through the worst ...the evidence of that is all around. And then look around at all those who love you and grab ahold

That's my .02 cents!

pearose said...

Your Dad was raised without being told he was loved - no doubt. I think he has had the same struggle you are having now. He's tried to show you through actions - remember the bike, the first driving lesson and the invasion into you and your first husband's child marriage when you first stayed in their house? Love isn't words, it's actions to reinforce those feelings. He and your Mom brought you up to show those actions to others. He's told you all his life through his actions. The words aren't as powerful as the actions, but they're nice to hear.

Anger is present in dementia. Who wouldn't be angry about losing their mind in those windows of 'normalcy' that become less and less? It's not your Dad, it's Lewy doing the talking and the thinking most of the time. Your Dad feels safe with you so don't confuse Lewy with your Dad.

You will NOT be rejected by your father when you go up to him. If he balks, say it louder and stronger - he may feel a little uncomfortable, but the words will be understood. It is a basic human need to feel loved - so the rejection you fear is based on your version of life as a little girl who could not compete with her brother for her parents' love. Maybe they felt the need to treat him differently because he was needier in that way. You may have seemed more independent than your brother. You were the strongest between the two of you and your parents knew that.

For your own sake, don't project silence as rejection - it won't come easily for him, either. He may not answer you as Lewy, but your Dad is in there, somewhere.

Practice while he's sleeping.

It's Just A Hard Way to Go

2008-04-15T21:28:00.000-05:00

When I got up this morning I was in a rush. The hospice regulars were coming over plus the counselor and a social worker. They had heard about the blog and wanted to come see it. Although they were supposed to come out anyway, I was a bit excited that they were interested.

As you might expect I’m in a get up, get dressed, get the house in order frenzy. I went over to check on Daddy and saw where Lewy had ripped out the catheter sometime in the night. There was blood everywhere. No pee, just blood. OMG! My mind goes into a mild panic.

Its 7:30 and the phone is ringing. Summer, our new nurse tech that replaced Yvonne was wondering if I would prefer she come on early or wait until her last call, since she lives very near us. No brainer….EARLY! I explained to her what had happened. She is actually a nurse, but is for whatever reason doing the tech work so I figured she could take care of the catheter.

No, well not really she said. She could tell me what to do, and I could do it, but she was not allowed to do such stuff. OK. I can take it. I’m tough. Sure Come on.

Summer arrived in no time. She came in and started looking at Daddy’s penis and all the blood. The decision was made to clean him up first. Her normal cleaning takes about 45 minutes. This time it was almost 2 hours. She had me get ice to put on him, then wet rags into the freezer to pull out nicely chilled to wrap him up to prevent swelling. She sopped and sopped the blood. It just kept pouring out. After about 8 ice rags it slowed down enough to wrap Lewy’s man hood up in a pee pad cut down to size and wait for the nurse. Summer called her and prepped her for the afternoon festivities.

Nurse Goodbody arrived about an hour later. With her were her implements of catheter insertion. She cleaned Lewy’s penis a bit and the blood was still flowing. Lewy was miserable. I had started the pain meds on him before Summer got there and was squirting him every hour on the hour all morning. He was still in agony. Nurse Goodbody inserted a new catheter. Blood poured through it; enough to fill the bag almost half full. It was loaded with long stringy tissue and blood clots. So much so that it quickly became blocked, and we decided to go for a second new catheter.

This one was being difficult. It just did not want to do right. She felt it was not fully inserted but was not completely sure. She brought with her several bottles of Saline Solution to flush his bladder. One by one she emptied the bottles, 400-500-cc’s into Lewy’s bladder. You could literally see his belly rise from the extra water. But nothing was coming out.

Nurse Goodbody gave me a choice. I could continue to irrigate every other hour or we could call an ambulance.

I went to get my shoes and socks. There was no way if he is blocked from peeing that I’m letting her go without dealing with it. She called the Hospice Doctor on call, then the ambulance service, and then the receiving hospital, and had it all set up in minutes. It would have taken me forever.

The ambulance arrived about an hour later and we played chase through downtown interstate traffic. Loads of fun. These dudes go 85 in 55 zones without lights…I’m more of a 57 miler myself, but anyway here we went.

We arrived at one of the large downtown not for profit hospitals and within 5 minutes I was back in the room with Daddy. They had taken him in, plugged him into all the monitors and had 3 nurses in the room when I arrived.

The head nurse came in and took over. She explained that they were going to insert a 3way catheter and irrigate him. We needed to get the blood out of his bladder. With just a few flicks of her wrist she had the one Nurse Goodbody had inserted out and this new 3 way in. As soon as she put the 3000cc bag of saline to it, the blood poured out the discharge tube.

Then came in Dr. Cutie Pie. Small framed, angular chin, with spiked blonde hair…maybe 32 years old…I’ve come to expect ER doctors to be a pain in the ass. Perhaps we have been going to the wrong ER…Dr. Cutie Pie was attentive to Daddy and was nice enough to take the time to talk to me about what had happened.

Then he asked about Daddy’s general health. He was looking at Lewy in all his glory. Eyes shut but fluttering. Straining for no reason. Lifting his arms in the air to do whatever it is he does. I figured this is another Doc without a clue about LBD.

“He is in late stage 7 Lewy Body Dementia.”

Dr. Cutie Pie asked if he had a biopsy or had a CT scan run for the diagnosis. I’m thinking I never heard of a biopsy for LBD but why challenge? What would be the point?

“No, he was diagnosed by his reaction to the meds and his symptoms. He had a CT scan but it was negative. Are you familiar with LBD?

His answer blew me away. He had studied under some of the foremost LBD researchers. I had to ask “Where was that?”

“At Harvard”.

You could have knocked me over. I told him about having set Daddy up for Brain Donation to Harvard. Of course then I had to accept he probably knew more about it than I did, so I asked about the biopsy. Sure enough, if you want to go that route (as he put it) you can have a biopsy to see if there are bodies or tangles in the brain. But we agreed quickly, there really isn’t much point in doing it. There are other ways like the meds…and yes very often mis diagnosed.

I told him how unusual it was to run into someone that knew about it. “Oh most doctors of course know”. This time I had to disagree.

“No, not really”. So far, only the diagnosing specialist, of all the doctors we’ve seen is the only one who had much of a clue beyond of course understanding what dementia meant. Cutie Pie was amazed to hear this. Hopefully that means he is talking it up to his buds and the word will spread.

I asked if he could give me a clue on expectations of a timeline.

“Tomorrow, the next day, or two months from now…If it were my Dad, I’d hope for tomorrow.”

Yep. He knows LBD alright.

It’s just a hard way to go.

2 comments:

Stella said...

Oh, our poor Mr Lewy. How awful for him and for you. How fortunate for you to find a doctor with whom you could speak. And question.

Stella said...

I don't understand why the doctors are so against considering the possibility that it could be LBD. My dependable PCP who has been treating my LO since he examined him for the bugs which had invaded the area of his genitals. No bugs were found. The dermatologist could find none and suggested a psychiatrist. That was so long ago and everything about my LO was "normal" we were amused. [How little we knew what the future would hold]. About 12 years ago he began "seeing" things. This was before he lost his sight. He had strange reactions to medicines... even Lipitor nearly pushed him over the edge, for goodness sakes! And the nighttime acting out dreams. A big one, oft repeated, was standing guard over the prisoners on Mussolini's train. It has been a long time since he wanted to go out in public because he discovered he would be talking with someone and ask about a family member,, only to be told that the person had died. He was so embarrassed and I knew he had gone to that friends wake. I knew something was extremely wrong but some days he was so much "himself", I wondered why I worried. In November of 2007, I found the forum. Need I say, "Aha"! The Neurologist said [shouting at me], "I say its strokes!". True he has had minor strokes. My wonderful psychiatrist will not commit to a diagnosis but he is treating it "as if" and my PCP smiles and says we can't know for sure until after death. I wonder why they feel this way. They know.

Kick Some Butt

2008-04-14T21:26:00.000-05:00

Lewy was awake for several hours today. He started out by wanting Hubbie to get him several cups of ice water. We gave him more liquids to day than he has had in the last 4-5 days put together.

He had a class A #1 stinky bowel movement that would gag a maggot. Not messy. Stinky. My stomach! If you find yourself changing a Lewy in late stage LBD I highly recommend a mask. I don’t know that the LBD has anything to do with it, probably more bodily systems shutting down…but OMG!

With that taken care of Lewy decided he wanted to get out of the bed. This is the first time since we got the lift that he wanted to get up. Hubbie and I rolled him over in the half sheet tuck method the nurses use to change his sheets and got the lift pallet under him. (I also had the good sense to get it under Daddy’s satin pull sheet. ) We hooked up the chains and I pumped the hydraulic jack to lift Daddy up over his bed.

When lifted, it puts the person being carried in the sitting position. The pallet also has a handy hole in the seat of it for potty time. I’ll have to try that next time he needs to go. With my luck it will be spray instead of solid…all over the hardwood waxed floors. But still possibly worth the try.

We lifted him over to his recliner, pushed him in line properly and lowered him into the chair. It was nice to see Daddy sitting up but it was apparently not very comfortable for him. I had hoped he could sit up for a while but that was not happening so I pushed the recliner into a more prone position. Nope that won’t work either…it put the catheter uphill from his…..bladder.

Again we had him upright with the feet raised to their lowest position. Two seconds later Tweak was in his lap. Buddies together again, if only for a few minutes.

Daddy said he wanted to get back in the bed. We lifted him back up and over to the bed and put him back in with the pallet under him. Changing sheets will be so much easier on him and on me. I can do it by myself now....

And then Trey (Lewy’s grandson) and his wife Bonnie stopped by to visit. Bonnie is a quite polite person that you would never expect to be aggressive…but bless her…when she found out that my cousin and his wife had not visited Daddy in the hospital, or since we got him home, she went straight over to their house, banged on their door…went in and chewed them both a new one.

They came by the next day for a 30 minute visit.

Bonnie is still mad at them.

I’m loving it. You go girl. Kick some butt.

1 comments:

kddove said...
today i was scared to read you. i wondered after saturday if he was going downhill faster... i think the up-down back and forth is worse, sometimes. not to keep comparing my dog to your daddy (well, i guess i am)the same thing happens with her. just when i think she's done for, after a seizure or a fall... i take her out and she gallops/hops/runs and i could swear, she's smiling...

Hope You Approve, Momma

2008-04-13T21:24:00.000-05:00

Lewy did not wake up today except for a few seconds when we…well when I had Hubbie roll his pull sheet under so the dried phlegm from the night before was not visible. I can’t take those kinds of body fluids, and this was crusty and brownish red rather than the clear or yellowish you might expect.

I suppose the red color means Daddy is getting some blood into his lungs.

The only thing he said today was that he wanted to tell me something. When I asked what it was, he could not remember, then he was fast asleep again. He is no longer breathing deeply and snoring with his mouth open. I had taken to spraying his mouth, but now that too seems to have drifted by the wayside.

Several times today I stood over him looking to see if he was still breathing. At one point I was in the recliner across the room from him where I could see the rise and fall of his chest as he slept. I tried to mimic Lewy’s breathing. If I was anything close, I don’t see how he is getting enough air. I had to gasp several times to get my needed quota while mimicking him.

Perhaps it is because I’ve never witnessed first hand the process of dying, but I’m not so sure that Daddy will make it the full month that Nurse Goodbody guessed it might be. Certainly he is not taking enough fluids or eating. I try to get him to eat and drink more, but we are down to less than 8 ounces of food and liquid combined per day.

Not so long ago time seemed to fly by. Days seemed like mere hours, now the days drag out so, it seems like a year between the Friday Hospice visit and the Monday visit. Maybe it’s because Lewy is fading so fast that it seems so long.

You don’t realize how fast things move until you do something like download a memory card full of photographs. 230 some odd pictures to be almost exact. For us that many pictures took us back to Christmas. Daddy was sitting up in his chair, opening his presents, (with assistance) and holding Tweak in his lap. They were such good buddies. Now she naps under his bed or in his recliner without him.

It is hard to imagine that he was walking, talking, and understanding pretty well only 3 ½ months ago and now he is this pitiful shell of a person wasting away day by day. He legs are so thin it is no longer hard to hold his feet up for Nurse Goodbody to dress his now almost healed sores. I wonder if we would have been just as well off to have not done the surgery, but I guess we had to. Amputation was thrown out on the table if we didn’t.

Still I can’t help but feel like he was doing OK after the surgery, until they drugged him for the ambulance trip home. The more I think about it, perhaps irrationally, I cannot understand why they would drug anyone up so much they would crap themselves from their shoulders to their knees for a short ride home from the hospital. When I left him in his hospital room to head home to get ready for his arrival, he was alert and responsive. Who/what could it possibly benefit to drug someone up so?

I want to go back to the hospital and find out who ordered the drugs and how much was given. Perhaps that is just SOP to keep the transport easier for the EMTs, but someone should know what the result of the drugs has been. I know in the Grand Scheme of things, it probably didn’t change the ultimate outcome, but it sure speeded it up; perhaps my months. Perhaps mercifully.

I look at Daddy and try to think through those things I need to say, but I cannot get past the first line without breaking down. I watched my mother Code in the CCU. I will never forget the last breath she took. It was so labored so deep. So final.

I’ve been thinking of her a lot lately. I’ve done the job she wanted me to do. I know that summer day in 96 when she said something was not right with Daddy, that she was passing information along so I would take care of him if the need arose. Perhaps she had some intuition about her fate. The last time I saw her, when I hugged her goodbye, I knew I would never see her alive again. I was almost right. I got to Atlanta just in time to see her pass away.

And so I have taken care of him, Momma. Not as well as you would have, no doubt, but I’ve tried very hard to do my best by him. I only hope you would approve.

2 comments:
kddove said...

I know your momma is thankful. and even if he doesn't know it, so is lewy. to be at home with his stuff and people he knows to feel safe around, and tweak and food he likes, even if he barely eats now, compared to a nursing home... you and hubbie are 2 people i am very proud to know. will you adopt me?

Stella said...

Pauline, I can only tell you the pride I feel when one of my daughters stay the night with their dad and I hear about the bathroom issues and such as they have experienced and not once have they called for me. I ask if it bothered them too much and they just smiled. I believe he waits for them. I think the next time I hear anyone low rate younger people, I will hit them over the head. Every generation has its heros. Your mother raised a hero.

Lewy and The Blog

2008-04-12T21:16:00.000-05:00

The realization that Lewy is going to take Daddy away pretty soon is beginning to sink into my brain. I’m an organizer, so I have gotten every thing in order for the brain donation, secured funeral home crematory services, gotten all the assets secured, and written the obituary. I’ve asked Hubbie to plan the music for the wake.

And then there is this. This strange web blog thing that has become part of several people’s everyday life. As we told you before, Hubbie and I are going to keep the blog going until the very last thing to say has been said.

After it is finished, I will copy it all into e-book form and post it to another URL that will be linked from this blog.

We had both hoped that some one would write their LBD stories to keep Living with Lewy Body going.

So as Lewy fades, hopefully another's star will shine brighter, and perhaps he/she will pick up Lewy’s torch and carry it for a while until another friend of Lewy’s comes along to bear the burden.

Timeline

2008-04-11T21:06:00.000-05:00

Lewy slept all day today except for enough time to consume a 6 oz. cup of yogurt with his pills all crushed and stirred in….yummmm. But Lewy doesn’t seem to mind or even notice. I managed to get two 8 ounce glasses of liquid down him for the day.

We had been using an eye dropper to wet his mouth, but he was getting strangled on the drops, so today it finally occurred to me to hunt down a spray bottle. I found the perfect thing a small empty hair spray pump bottle. After a thorough scrubbing, I squirted Lewy’s mouth a few times. It did not wake him up, but his lips puckered up and the tongue came out to catch all of the mist.

Our friend, Alex, a retired Orthopedic surgeon dropped by today. He was amazed at the decline in Daddy since he saw him last, about 3 months ago. Three months ago Daddy was walking and talking. Now he sleeps.

Nurse Goodbody came by today to check on Daddy. His feet are healing up very well. It’s too bad it took so long for it to happen. Even with the Hoya lift I don’t see Daddy ever getting out of the bed again.

She reported that there was some change in the lungs, a bit more congestion.

I told her Daddy had said he saw Momma three times the other day.

She just nodded and said “That’s a sign.”

I had to ask if she could begin to predict the future. I know it was unfair because Lewy’s are so different, but she guessed maybe a month.

Maybe a month.

That’s were my doctor friend was guessing too. It seems so odd to have a time put out there. I need to find a way to say the things I need to say to Daddy, but my brain just shuts down when I try to think about it. Is what I say for me or for him? They say the hearing is the last to go. No doubt true, but if I’m talking to Lewy rather than Daddy will I know? Can the “talk” be avoided by writing it down instead? It’s a terrible thing when really the only thing that needs to be said are those three little words I can’t get to come out of my mouth.

Momma and Daddy didn’t raise any touchy feely kids, that’s for sure.

Lewy has stopped opening his eyes. He would not or could not look at Nurse Goodbody today.

There is no more flirt left in him.

4 comments:

kddove said...

i feel so attached to him with your everyday life stories, even though i have only seen him 3 or 4 times... i wonder if you would let me have a copy of the photo of him looking out the door? it's such a good picture, i like to frame it...

Stella said...

Why, oh why, are those three little words so hard to say???. i found that even with this dear heart of mine, Freddie. Edward and I have gone years without saying the actual words. I'm not sure of the importance for our generation. My younger members say it each time they say goodbye to us and it is great, but we just did not say it as younger people. I knew when he gassed up my car he loved me. Or when he bought a new replacement for my T-Bird, which I loved. I knew he loved me when I was on a lonely road one night and four or five "hoods" made a human fence across my path in an effort to stop my car. My LTD would not be stopped!!! At this stage of our lives, I enter his room each morning with a simple song, something like, "Let me Call you Sweetheart, I'm in Love with you..." or a Louisiana favorite, "You are my Sunshine, My Only Sunshine..". This morning I sang, "There are Smiles that make me Happy... " When I reached, "are the Smiles that you gave to me", I saw a smiling crinkle beside his eyes and mouth. I know you sing, you have entered songs on this story of yours.

I can't sing. I positively can't sing. But I sang to my babies and now I quietly sing to Freddie because one night several years ago, I heard his rambling voice as he was in the middle of one of his dreams, or whatever it is in night time talking. I heard him say, I guess she loves me but she never tells me. So I sing and hum and call him my ole Sweetheart. He responds. The first few times are hard, but "Try it, You'll like it". For starters just say, "I told Hubbie that I have the dearest dad in the world".

pearose said...

Pauline,

Any regrets you may have after he is gone will be more painful than saying the words that he will hear you say.

I told my grandfather (my most favorite person ever) that he was the best grandfather a grandchild could want and he cried like a baby. So, I then told him that he needed to dry up. :) He then laughed as hard as I've ever heard him laugh. He loved hearing those words and being told that he was loved. He especially loved being teased a little because he would tease right back. I couldn't say it enough to him because I truly loved him and his company.

My cousin stood with me at his casket and regretted that she had never said that to him and she lived with him most of her life up to that point. It hurt me to hear that because he needed to be told how much we appreciated him.

Let him know how you feel. He already knows you do because of what you do for him every day. I promise, the earth won't open up and swallow you. In fact, it may look a little brighter for you (as soon as these storms pass) after you say it the first time. Give him a chance to say it back to you, as well. It's never too late to learn.

Pauline said...

Y'all are Killing me Softly. kddove you certainly may have a copy of the photo.

A Hard Day's Night

2008-04-10T21:01:00.002-05:00

Lewy slept all day except for waking up just enough to have some fluids squirted into his mouth and to groan once when the nurses aide substituting for our regular Yvonne, was bathing him. He hasn’t taken any of the available drugs other than his normal vitamin, zinc in mass quantities to heal the sores, and his few prescription drugs including his “Anti Crazy Pill”. There’s no need to call it that any more. Lewy doesn’t care anymore what the pills are. I crush them, he takes them in his yogurt.

He used to have names for all his pills so he could remember what they were for. “Anti Crazy Pill”; “No Pee Pill”; “Pee Better Pill”, “Walk Better Pill”. With these names Lewy could remember what he had taken, or missed, pretty well.

With Lewy sleeping all day there is not much to do. Clean up the kitchen, do laundry. Some office work. What I can’t do is get out of ear shot of Daddy; like a dog on a thirty foot retractable leash. At least I have gotten the front porch mostly cleaned up for spring.

So the day is fine; Right?

Wrong.

I don’t know why it is, but when Hubbie gets home, I flip out. I go silent on him. I get out of the house almost as soon as he walks in the door.

I want to be outside without my leash.

When it gets dark and I have to come in, I’m mad…not mad…irritated….no….maybe just crazy. I get emotional and irrational; a thing I cannot tolerate, so it pisses me off at me. Hubbie thinks I’m mad at him; (Maybe because he’s the only other conscious person in the room?)

He shouldn’t be so sensitive.

No…I shouldn’t be so sensitive.

I’m loosing my mind……Now what is it I’m mad about?........No!..... I’m not mad!.....I’m something, but I’m not mad.

Now that its time to go to bed, Lewy is waking up. He will want to talk about the business, and the ceiling fan. I’m not sure if he likes the fan or doesn’t like it; but it sure does attract his attention.

I need a nap. It’s been a hard day.

5 comments:

Anonymous said...

Dear Pauline,
Isn't it the saying that those closest to us bear the brunt of our mood? I think Hubbie can take it, as I'm positive you could also if the boot were on the other foot.
Forgive yourself, you need to vent sometimes
Kind regards
Dee

Hubbie said...

I love you girl.
How about I stay home tomorrow and you slip the leash and run for a while. Of course it is supposed to storm so I'll have to towel you off when you get home.

old friend said...

almost the weekend, Pauline. You can make it and then you'll feel the wind on your face...and a space of time for a tiny bit of freedom (thanks very much, Hubbie). And thank you, Pauline for HONEST, true writing.

kddove said...

I surely don't have all your problems, but I do definitely relate to the mad/irritated thing. But i cannot figure out why.... what am i so pissed about, and at whom? it's like i want everyone in the world OUT of my space... even my dad. i want to be able to come and go without any one to discuss it with, or feel i need to discuss it with. But i am sure hubbie gets it... just read what he writes!

Stella said...

Pauline, I detected a threat, or a veiled promise in the note from Hubbie. Isn't marriage fun?

Knight in Shining Armor

2008-04-09T12:42:00.000-05:00

After a day long nap that lasted into the night…completely through the NCAA Women’s Championship Game….Hubbie and I talked about how it was sort of like being alone again, even though Daddy was in the room.

That reminded me of my friend Meredith that had her dearly departed dog stuffed and brought home. I asked her if that would not feel weird; weird to have the dead sitting there in the living room with you?

But this is not much different. We have the near dead in the living room with us. Lewy only wakes up occasionally for something to eat or drink.

Then I had to chuckle a bit. Back when I was really stupid and 16 years old, in order to get out of the house, ran off and got married to the local almost hood. We didn’t tell anyone for a couple of weeks, then were ratted on by an employee of my Dad’s girlfriend who was the nurse that drew our blood for the tests. She recognized my last name.

Well there we were. Married. Momma crying loudly about me doing that to her…Daddy was just quiet. Mad quiet. He was practical, and realized what was done was done and everybody might as well get used to it.

Of course getting married to get out of the house worked….John moved in with me and the folks. Talking about tense. Daddy didn’t help anything either by not ever saying anything.

I don’t recall for sure if it was our first night at the house together but it probably was…John and I excused ourselves to go back to my – our bedroom to watch TV, and get away from the parents. We were in the room just long enough to get into our sleepwear…for me my jammies, for John, not much; not much at all.

We had gotten in the bed and turned on the TV. There was a peck at the door.

“Yes?”

Daddy opened the door, wide open walked in with cokes and snacks, had me get out of the bed – he crawled in next to John, then invited me back in.

Yep. He sat there between us and watched TV until he could stand it no longer, and finally gave up and went to his own bed.

He protected me as long as he could.

1 comments:
Stella said...
Yes! Always was a man of few words. Gotta love him.

Fecal Salute

2008-04-08T12:38:00.000-05:00

There are some things you never want to talk about, but we’re going to make you read about. I suggest you not be eating for parts of this one.

Yesterday was a typical Monday. After being a 99% vegetable on Sunday, Daddy…pardon me….Lewy was rip raring to go. I love days when Daddy is here and there are a few special moments to share. But I’ve got to be honest; I don’t like Lewy one bit. Lewy is an obnoxious, impatient, one year old. Only if he were one, I’d know to correct his bad behavior before the child turned two. How do you go about correcting the behavior of a one year old child that will be 6 months old very soon?

Lewy woke up early. “PAULINE!”……PAULINE!......PAULINE!

This is payback for going off with my girl friends over the weekend. All I wanted was to sleep late, maybe as late as 8 AM. But no. Hubbie leaves for work about 7 AM, Lewy starts hollering at 7:01 AM. This morning (for my –yes I know I’m late-post) Hubbie had not pulled the car out of the garage before the hollering started. Not being very happy in the early mornings until I SSS…I had not gotten my eyes open, much less to the first S.

Yesterday Nurse Goodbody removed the pump from Daddy’s right foot and ordered us a Hoya (sp?) lift. I love Hospice. Yesterday his meds arrived by mail, and his lift arrived just before dark, having been ordered no more the 5 hours earlier. So now we are free to lift Daddy up, but we need to practice doing it first on each other. The best part of the lift is if he falls on the floor, I can now pick him up by myself.

Or maybe the best part of the lift is the support sling with the bottom hole for going to the bathroom…..Yep OK the bottom hole wins. If I can just get Daddy back on a toilet seat!

Now this is where I wish to digress….We had moved Lewy into stage 7. I am now more convinced than ever that it was a massive drug dosage of whatever it was they gave him to put him in the ambulance to bring him home. At the time we thought that was probably a good idea. But just watching here and with the meds I’m giving….they must have given him enough too just not kill him. Now that I know what a drug induced sleep looks like…yeah, he was severely drugged. Way over drugged. Here we are thinking he might die within the month…well maybe…but now with his feet better, and once we get him in the lift and into a wheelchair…he might actually be in stage 6 again. I’m not the expert, maybe no one is, but heavy drugs to induce sleep are bad for Lewy’s. Really bad.

Not to say I have not given him my share of drugs to “settle” him down. I have to wonder are the drugs for me or for him? What does it matter if he throws off his sheets or chews his pillow?...Drugs for that….If he hollers at me incessantly to where I’m going crazy….drugs for that…If he gets a strained look on his face…drug for that. If I took the drugs we are to give him, I’d never be able to get out of bed…..

But I digress. We are going to get visual here today brothers and sisters. Visual. I want you to think about yours or perhaps some one else’s anal opening. Picture it in your mind. For those of you like me you might prefer to visualize your own as a matter of comparison.

Now I’m no anal coinsurer. I’m going on the assumption that most everyone’s is about the same.

Yesterday, being Monday meant that it was Hospice day. Dear Yvonne came early to clean Daddy. She is so good. Obviously her job has taught her many things…one being to wait to wash butt…last.

Lewy had been saying he needed to shit for about 3 hours, but so far there was nothing. I had been cheering him on, hoping for the delivery prior to Yvonne’s cleaning but it just was not happening.

Yvonne suggested we put on two diapers; one the top to catch it, the other to be overflow or if lucky the next diaper, already in place and ready to go, or so I thought. Brilliant.

So we proceeded to double diaper him. Yvonne cleaned his bottom and greased it with thick white cream loaded with zinc oxide.

Then the delivery came.

Yvonne was good… “Come on Mr. Lewy, push it on out”. I’m on the other side of the playing field rooting for the same team…Push it out, Push It out WAY OUT!” Just as we were about to drop back and punt, Mr. Lewy shoved the little brown odd shaped ball out past the goal line. There was an immediate whoosh of warm air that followed.

No big deal. I’ve seen this before. My Dad’s asshole. I’m sorry; there is no other way to get the visual. A normal butt has an aperture sort of thing going on that opens and closes when debris moves through the hatch. Not Lewy’s butt. Lewys butt has been permanently set on “open”. I don’t know camera speak, but if you could open the lens full open and let it stay there. No doubt like an observatory….

So here I am peering down the telescope straight into blockage just below the rim.

I looked at Yvonne. She looked at me…Oh…..Oh….I know that look…That’s the…This is YOUR JOB honey….look. Hubbie uses it at times just like this.

I put on the rubber glove…asked Yvonne if I had to go in. She shrugged her shoulders…”That’s what the nurses do.” Oooooooohhhh…..nnnoooooooo….

She pulls him farther over to his side. I now have a full face to butt hole up close and personal viewing experience. The actual opening that does not ever close any more is relaxed at about a half inch (1 cm) opening. There is no more pucker around the hole…it’s just kinda limp. The darker ring around the anal opening, at least as far as I know, does not extend out a full 2 inch radius from the edge of the anuson a normal butt - however with Lewy, it's pretty far out there. It too, was flattish with no muscular structure.

Yet I could also see feces sitting right there in the hole.

So with glove on and pulled as far up my arm as it would go….I did what Nurse Goodbody had done, I stuck my index finger in for a poke-see.

There were lumps, hard ones soft ones….Daddy was not appreciating the adventure at all. “Wooooo! Oooooooo!!!”

I bent my finger to make as much of a spoon shape as possible and scooped. A large finger full…well a palm sized finger full. Yvonne wiped my gloved hand. I went in again and again and again, until all I was getting was thick oatmeal consistency; or for you Southerners, lumped up - sat too long grits. Thick enough to hold together, but still easily squished by hand.

This was disgusting. I lost my cool and started my uncontrollable gagging. Poor Yvonne probably thought I would vomit right there, but I’m good with deep lower stomach heave –hos. Merely painful, not productive.

And there it was, the “Fecal Salute”……I found myself with my ¾ length sleeves, attempting to wipe my brow with my gloved hand at 90 degrees from the forehead with fecal matter on the palm an at least two fingers. It’s then that you realize there comes a point where you just have to stop. Getting a clean run is not happening. Then the gas, and the ooze, gas, ooze, gas, ooze. We wiped him up over and over. We had to remove and replace that extra pair of diapers.

Finally, he settled down to just farts. Yvonne was gone and Lewy and I were home alone. It was a beautiful spring day; I had flowers to set out and the front porch to clean. So I gladly started into my chores.

PAULINE!

Trotting back into the house….”Yes Pappy, what do you need?”

I just wanted to know where you were.”

“I’m right out side your window. If you will look outside, you can see me. I’m going to go clean the porch now, OK?”

“OK.”

I get the broom and the leaf rake and decide to start in the corner.

“PAULINE!”

I sat down the broom and went inside. “Yes Daddy?”

“I wanted to know where you were.”

I’m right outside the window. I’m cleaning up the front porch. You can see me through the window.”

I go back out and I get the two corner chairs pulled out and begin to sweep.

“PAULINE!”

This went on for four hours. He would give me just enough time to get my tools in my hands and to begin using them, when he would holler. I just got to where I hollered back rather than go back in; which made him holler more.

Now I have to think to myself. I could drug him to shut him up. That’s Lewy, it’s not Daddy. He has a short term memory of 5 minutes tops. I need to get this porch finished and it’s a big porch that is very dirty. The summer of 2007 killed almost all my permanent potted plants, so there were these huge dead plants to take out of pots and toss the dead and replace with annuals.

“PAULINE!!”

That’s it!... I’m drugging him.

The persistent hollering increased in frequency, so I gave him an anti anxiety drug. He started twisting his sheets and chewing on his blanket. Then the spasms started. I gave him an anti spasm drug. If I had all those drugs, you would have to scrape me up off the floor, but no; Lewy was getting rowdier.

It got too dark to work out side, Hubbie was home and it was time to settle in for the NCAA Championship Game that Memphis threw away.

Daddy had finally settled down after the over time, and was looking out the window toward the porch. I had to wonder if he could finally see me out there working.

So Lewy and I Slept Together Again

2008-04-06T12:33:00.000-05:00

Hubbie here.

Pauline just called to see how things are going here. She and her girl friends are sitting on the balcony of a condo in Nashville watching the river flow by. My response was “Why are you calling? Go back to your party!” I wanted her to have a real break; to get away as long as she could. Right after I said that the phone went dead and I felt like a low life scum. I called her back. It was a good thing because she thought I had hung up on her. I assured her everything was fine and they were, at least in Lewy terms.

Pauline told you of her hectic day yesterday. She seems to always have that kind of day before an event and I’m pretty sure a pajama party with 50-something year old girl friends qualifies as an event. When I got home yesterday she had loaded up the cooler and some bags full of the stuff (Booze and such) she had volunteered to supply. The girl friend with the giant van picked her up and they were on their way to PARTY!! I was glad. The girl needs a break. 24/7 Daddy Duty is a really tough job; especially when it’s your Daddy.

My evening with Lewy was pretty uneventful. I had a drink. Lewy had a drink. I watched the hockey game. He watched the fan. Both, it seems, were going fine for the observer. It’s odd that even though he thinks I keep a notebook of everything he consumes, Lewy seems to take food better from me than from Pauline. He resists her but with me he always finishes the serving. Whatever the reason he consumed a cup of Lewy food Pauline had stored in the fridge and had a full container of key lime yogurt for desert. I fed myself a hamburger and we settled in for the night.

Pauline has told you that I am a very sound sleeper. She seems to think this is a bad thing but in my mind whatever will not kill me I may as well sleep through. I decided that I had best sleep in the recliner in the room with Lewy just in case. I wanted Pauline to come home relaxed and be able to stay that way for at least a little while; not come home to me having fouled something up. (I believe most of our readers are women and wives and I can just see you nodding your heads. – Right Ms. P?)

Anyway sleeping in the recliner seemed like a good idea and it was, until about 3:30 AM when I woke up with a major crick in my neck (strained muscle for those of you not from the south). Lewy seemed to be resting soundly so I decided to get in the bed for a while. Tell me, how is it that someone who at times seems almost stone deaf and be disturbed by the sound of bare feet on a wood floor? Yes Lewy awakened and wanted to know what I had planned.

“I’m planning on going to bed for a while. You holler if you need anything,”

“OK”

3:45 AM. “Umm…GMM..NDD!”

Rising I come to Lewy’s side as ask what he needs. “These covers are sliding off.” He had pushed the blanket off to one side so I covered him, patted his head and went back to bed.

4:07 AM. “HEY HUBBIE!!” Clear as bell and loud enough to be heard outside.

“What is it Lewy?”.

“Get this cat out of my bed.”

“What cat?”

“This kitten here.” Motioning to his hip, Lewy shows me where the kitten is.

“OK Lewy the kitten is gone. I’m going back to bed. OK?”

“Yeah.”

4:30 AM. “PAULINE!.” Not so clear this time but plenty loud.

Stumbling back into the room I said, “She’s not back yet Lewy. What do you need?”

“Have you seen Mama?”

“Your Mama”

“Yeah.”

Lewy’s mother has been dead for many years but this did not seem like the time to point that out so I said I had not seen her.

“Up there.” Pointing to the ceiling fan.

“No she’s not there Lewy.”

“Well she is supposed to come by to see about some work. It umnd dayr gummel.”

“OK.”

I finally determine that he wants to know when she will be there so that he can go to work with her. I can’t bring myself to tell him she won’t be coming so I opt for a dose of anti-anxiety medicine. Just to be safe I move back from the bed to the recliner and after a few more issues with sliding covers, Lewy relaxes and I fall soundly asleep. Right in the interesting part of a really weird dream a voice from outside the dream calls. It’s

8:30 and Lewy’s feet are cold. I cover him with another blanket and go to make coffee.
A while later I am preoccupied in the tiny room of the house when the phone rings. It is the call from Pauline.

Like most houses we don’t have a phone in the tiny room so it took a moment for me to get to the phone. In the latter part of that moment Lewy announces, “Better hurry up. There ain’t no backstop on that thing.” I make a mental note to have a backstop installed on the phone in the new place and then have the afore mentioned conversation with Pauline.

I have my coffee and Lewy has a good breakfast of Ensure and left over beans and polish sausage, pureed of course. After breakfast he informs me that he must get up and get dressed for work. We have the first of a least a dozen conversations about how he can’t get up until we get the wound pump taken off of his foot. I don’t think he has ever grasped the concept of the pump on his foot. There is, however, one concept upon which Lewy still has firm grasp.

I believe it was wound pump conversation number six. Lewy had asked again if I would help get him out of bed. I again explained that he could not get up until they pump was off his foot. I noted that Nurse Goodbody would be coming by next week and she would look at it.

“You remember Nurse Goodbody don’t you Lewy?”

He is looking directly into my eyes.

“You know the one you like to hug. The one with the big………”goodbodies”?”

Lewy’s eyes focus and his cheeks began to move. In the next instant his face became involved in a great large smile and he began to chuckle.

“Yeah. I remember her. I like to hug her.”

I smiled at Lewy and pulled the covers over his shoulders. Lewy relaxed and rested for a while. If he dreamed I have an idea about who some of the characters were in the dream.

Lewy slept for a while and I came in to write this story. A little while ago he woke up and called. When I tell Lewy to “Holler if he needs something”, I mean it so I went to see what was up. He was looking over at the glass doors that lead to the back porch.

“Do you see her?”

“No Lewy I can’t see anybody.”

“She is leaning against the door.”

“What does she look like.”

“All I can see is her back.”

What does it look like?”

“It’s black.”

I figured the lady’s back was black because she was in silhouette against the glass door, but a bit later Lewy called me back into the room and now I’m not so sure.

“She’s gone.”

“Who’s gone?”

“The lady over there.”

“You mean the lady with the black behind?”

“Yeah. You don’t reckon she got offended do you?”

“No, I don’t think so Lewy.”

“Good. I know she worked hard in the war. I wanted to show her respect.”

Some day the folks at Harvard are going to study Lewy’ brain. I hope they learn a great deal from it but they will never know the wonderful things that came from it.

Since this is the Hubbie portion of the Lewy Chronicles I’d like to end on a less somber note and a good friend just helped me toward that end. Mr. W called to she; if Pauline had returned. Mr. W is one of my (our) oldest and dearest friends and as such we typically greet each other with such phrases as “How are you Mr. *@%$*%*&*#@!” I informed my friend that Pauline had not yet returned. Mr. W inquired as to how my day with Lewy was going.

“Well, if you must know, at the moment I am changing a catheter bag.”

Silence.

“Don’t have a comeback for that one do you?”

2 comments:
Ms Pearose said...
I can honestly say, Hubbie, that I've never considered you to be one of those guys that foul things up. Seriously. But, I have always given Pauline credit. Hey, I gotta stand with the girls! :)

Making people laugh is more your style, unless of course your wicked humor is directed my way - then I RUN (even though I laugh later)! You've put a smile on my face too many times to not recognize that gift of yours.

Pauline sounded like a new woman yesterday, so her short time away did wonders for her. Given your description of Lewy's face as he broke into a smile, it was a good day for all. You're a good man.

Stella said...
Hubbie, you could give diamonds. You could give her rubies. Roses. lingerie. All on a silver platter. None would be a more wonderful gift to show your love than the gift of yourself to her father.

Making the Final Arrangements

2008-04-05T12:30:00.001-05:00

This post will say 1 AM on Saturday, but it will be up much earlier. I have a respite planned for the evening. A clutch of girls from my high school graduating class are going out on the town tonight.

After our 35th year reunion we stuck together and started doing things together…not just the girls but about 15-20 of the classmates.

Tonight one of the guys who is a wealthy (Like that Buddy?) developer is loaning us a condo downtown that he has. About 10 of us girls will go down, Buddy is buying us dinner and we will spend the rest of the night partying. Hopefully all night. In the morning we have breakfast and a tour of the Flea Market planned.

I need this so badly. I’ve been a basket case all day.

For once I was actually sleeping late. The phone rang. It was Yvonne, on her way. OH NO! I haven’t prepared. I’ve got to gather up all the clean bed clothes and towels get the hot water going in the coffee pot to pump up the heat for the wash water.

I need to get Daddy his meds and get myself dressed…Damn. It’s the phone again. It always rings when you are in crisis mode. Yvonne arrived and we began to tend to Daddy. Well she does, I watch and offer help but she really does very well with out my interference. Still I wasn’t ready, so I’m getting the razor, the shampoo, and clean pillow cases.

Since we started putting the satin pull sheet under him, and a satin PJ top on him, his back is getting much better. So we now have a satin pillow case and a satin top sheet to lie next to his skin. Very Slippery.

During the cleaning and rolling, the phone rang at least 5 times. I took it and stuck it to my belt loop…that will shut it up…and it did for a few minutes until Nurse Goodbody called and said she was near by.

Within 5 minutes she was here. And the phone is still ringing off the hook. I’m gonna smash the damn thing one of these days. It can go for days and nothing. THE VERY MINUTE you are too busy….there it goes. The morning continued to be a mad house.

Earlier I had emailed every one I could think of that worked at Vanderbilt asking for leads on whom to contact in the Pathology Department to get the Doctor lined up and get the contact info to Harvard, just pure Project Coordination. Glad I do it for a living. I’d hate to think that someone without Coordination experience was set on this tour without help. But there is always help.

Sure enough I got several phone numbers and a couple of names that might know someone. Good friends, always there for you.

But it was later, after getting all those leads when I was emailing Betsy, my financial guru/friend and told her of my woes. Bless her heart, she replied, “Email Ann. Ann knows a lot of people at Vanderbilt.” Betsy had introduced me to Ann years ago. We have had many enjoyable encounters so this was not like going to a stranger.

The next thing I knew, I was getting Cc emails from Ann and her friend at Vanderbilt Pathology. Is that sweet or what? Now that I had my contact, I re sent the info on Daddy so she would know who what when where…

At 11:45 Yvonne and Nurse Goodbody had gone, and there was some peace. What’s this? Furry little things nipping on my toes! OH NO, I forgot to walk Tweak and Lila, poor things they must be about to burst! So I took them out in the rain for a long walk. We went down by the pond and ruffled up a few frogs, came up back by the front window where I can see Daddy sleeping away and the damn phone rings again.

Come on Puppies! Let’s go.... Run!

It was a very nice lady from the Harvard Brain Tissue Resource Center.

She sounded so pleasant and nice, even with her New England accent. Not the harsh (Twisting mouth) Joor-see’ accent.

She had been on the phone with Ann’s friend at Vanderbilt. The doctor had been selected and on-call backups, because of the uncertainly of the timing. The paper work had transferred between the two Universities, and everything, I mean everything had been taken care of. BLESS THEM. She explained to me the procedure, explained who I was to call in what order when Daddy dies. Then they would take it from there. I call Hospice first. Then call Harvard. Harvard will call Vandy to get the doctors in and the OR ready to receive Daddy’s body. They will harvest and ship Daddy’s brain to Massachusetts.

It was wearing on me. All of the death and dying emotions were just crashing down. All this was such a relief. The only other thing I had to do was select a funeral home for cremation that would also transport the body. The nice lady at Harvard sent me a list of local crematoriums and funeral homes. How very nice.

I called a large one nearby with a good reputation and talked to the Owner/manager (not sure) anyway, he told me to start saving ice in gallon freezer bags. Should Daddy pass away in the middle of the night, we needed to start icing him immediately, then start calling. He made me feel like he knew what had to be done. He could not remove the body until Hospice had finished their paper work. It might take an hour in the middle of the night to get them here, much less finished. We will ice him down, so by the time everything is done they can transport him to Vanderbilt without any problem. I only want to be sure the brain does not deteriorate any more than absolutely necessary. The funeral home will not charge us to take Daddy to Vanderbilt or return him for the cremation.

The funeral home director then asked if Daddy was a Veteran. I could not hold back the tears any longer. The VA will provide a head stone and a flag, and a spot in the National Cemetery. I’m torn, whether to put him beside Momma’s ashes or put him in the Military Cemetery. The one here I think is the second largest one in the country. It is very nice.

I kinda think Momma would have wanted him at the National Cemetery. With Daddy’s blood line dying out, he will be forgotten at the private grave yard where Momma is. She might however haunt me for putting her over there with the rest of his family…but at the National Cemetery, as long as rain falls and grass grows, he will be remembered.

3 comments:
Stella said...
And he will be remembered through your courage and bravery. The soldier's kid who cared enough write.

old friend said...
wish I could convey the emotions your words painted as I read them, you Pauline are quite the wordsmith. So happy you had the girlie thing to take your mind off Daddy for just a while! Momma would agree and be so very proud of you!

pearose said...
I'm glad he's going to the Veteran's place of honor. Our World War II heroes are leaving us and they're the ones that fought the Big One - with weapons that were the straight forward kind and without computers to do the aiming. A good choice and your Mom would be proud.

Money Can't Buy Me Love

2008-04-04T12:27:00.000-05:00

I had a doctor’s appointment today. It was to have been a joint session with Daddy, but he is never going to the doctor’s office again. I had to promise to get back on my meds, because since Daddy went into the hospital I have not gotten back into a daily routine. Perhaps that’s why I’m getting so scattered?

Physically, I’m doing great, mentally my head literally hurts. The bowl shaped pain that wraps the skull and pushes in kinda headache. My break down and cry at any opportunity headache.

Kindly my nephew’s wife sat here with Daddy so I could get out of the house. It felt good to know I could completely trust her. She administered meds, feed, and watered, and made efforts to communicate.

Today I had my last Dr. Appointment without Daddy, so I thought it fitting to go to get lunch at the (horrible) restaurant Daddy always wanted to go to for the last time.

Today was my first trip to the drug store in 7 years that I did not get meds for Daddy. Fortunately the weather was horrendous. I think we got 3-4 inches of rain. I managed to go to these events and not get caught crying because of the drenching rain.

But then I had to go to Daddy’s bank. Years ago Daddy started taking me to his bank to introduce me to his banker. For the last 11 years, I’ve gone with Daddy to visit the folks at his bank. Fortunately, long ago Daddy had my name put on his account as a signatory. It makes life much simpler that way. Daddy had a CD mature so I needed to go see about it. The bankers suggested because of interest rates being so bad, that I put the money in a savings account in my name alone. I would get a 2% better return, and it was now…no longer in Daddy’s name. I could not sit there and sign the papers without breaking down.

The bank officer that was handling the accounts went back to the Branch Manager, the man Daddy always came to see, and informed him of what was going on. He was immediately out expressing his regrets, recalled my Mother’s death, and how hard that was on Daddy. Then as any decent southerner would do, he placed his hand on my shoulder, looked me straight in the eye, and said, “If there is anything at all I can do, please let me know.”

I told him it might help if he would call Daddy to tell him all the money is all right; Lewy worries so about the money. The manager disappeared for a moment and returned with his business card with his personal cell number and his home phone number written on the back. “If you need me to come to the house and look at him, to tell him everything is fine, I’ll be happy to.”

He didn’t say so, but perhaps that is part of being a banker. Especially with this WWII generation; you found a banker, you stuck with them, and they knew you and every intimate detail about your finances. No business man could have been closer to Daddy.

I will ask the banker over and hope he can settle Daddy’s mind about his money. Perhaps that is the one thing that Daddy needs to let go.

2 comments:
Stella said...
Pauline, at the end of the day you will know that you have thought every thought and done every deed to make Daddy's days as worry free as possible. I hope all of you rest well tonight. Yes, the money is in the bank.

old friend said...
I thought of you lots today driving up the freeway and listening to Mr Russell. It rained off and on here too...but I think it was good, it cleanses away the dust of everyday living...

Living and Dying in 3/4 Time

2008-04-03T12:23:00.000-05:00

Lewy was pretty much out of it today, except of course for the obligatory reach out for his hugs from Yvonne and Nurse Goodbody.

I had a little chat with Nurse Goodbody about Daddy’s condition and what I should expect. I guess I want more than what I can read on some stupid blog…

She showed me a small pamphlet in the Hospice notebook that’s titled “Gone From My Sight”. In it the physical steps of dying are listed out. One to three months; One to two weeks; One to two days to Hours; then Minutes prior to death what a person might experience, with a heavy dose of “everyone is different”.

For Lewy’s the book is not much help. Where the author list withdrawal; and increased sleep; as in the months stage, for Lewys, that’s in the years stage. The one to two week phase of talking with unseen people, confusion, disorientation…with Lewys, with my Lewy, that’s been going on for two years…maybe three.

Since the cognitive changes are no clue for us we must look at the physical characteristics. When death is within two weeks Daddy is sitting at 50%. Does that mean three or four weeks?
I wish there were a formula to go by…if they take in this much food and liquid then they can last X days….I’m sure it’s out there, but it would probably encourage force feeding from those of us who are wanting to hang on as long as we can to our about to be departed’s.

I found myself on my hands and knees scrubbing the kitchen floor after my talk with Nurse Goodbody. I think my house is about to become very clean. I hate housework, but some how all my life, when I’m really stressed I get into big house cleaning projects.

The first “project” is to prepare my brain for the certainty and eventuality of what’s going on here. Daddy’s room is now empty except for boxes of medical supplies stacked against one wall. So tomorrow, I will start cleaning that room; Scrubbing the trim and baseboards; Washing the walls; maybe even paint. We took down the door so Daddy could not fall behind it and block us out. It’s time to put the door back up.

We are moving next March, so it is the perfect place to box by box begin to put aside everything we won’t need again, or are not taking with us for a massive moving sale…or who knows maybe smaller yard sales if we get the room full of stuff. Why not go ahead and make that room something else before Daddy passes away? It will be one less thing to have to clean up/ settle up after the fact.

I probably won’t cry when I clean it tomorrow. If I were cleaning it after, I’d be sobbing all the way through it.

I must learn to take it as it comes. I can not stop Daddy from leaving me, so I might as well get to work on the gonna-be-for-sale-next-spring cleaning.

Daddy never did like a lazy person.

5 comments:
Stella said...
Oh, My Dear, for every point you make in your writing tonight, it brings memories. After the sudden death of my father due to an accident, the family members were gathered on the front porch following the funeral. It was late in the day and my mother spoke to me, "Lets go, Stella, the cows need to be milked and the water needs to be drawn from the well". That was sixty years ago but I still think of that day, whenever I settle down to morn for too lengthy a time. Yes, the grief was there but she taught us that life goes on. Go after that bedroom and give it a through cleaning... you are there if your dad needs you or if you need to sit and rest beside his bed... May Mr Lewy sleep peacefully tonight.

dee said...
Pauline
Your writings are wonderful, as are hubbies and I love to come here and see how Mr Lewy is doing today.
It seems you're both in a similar place to us. My MIL is placed in a wonderful nursing home, receiving excellent care and someone visits her daily without much fail.
She's also imobile with not too much interaction, but on her good days her cheeky personality shines through. She doesn't eat enough to keep a bird alive, or so it would seem and we hope for a peaceful end to this awful torment of a disease.
Take great care Pauline
Dee

old friend said...
wonderful piece, though you are the pioneer for others on this journey...wish I could come visit, I'd be on my knees with you !

Karen said...
I think your activity is a good thing. Your daddy will go when it's his time.

An 87-year old resident with Alzheimer's at the assisted living where my LBD mom lives died a couple of weeks ago. She had been slowly declining during the past few weeks, sleeping more, less interested in communicating, less interested in eating. She had been on hospice since her daughter Betty hospitalized her to have her re-hydrateda few months earlier (she had suddenly acted nearly comatose then - it was so sudden in a woman who had been communicating and eating that Betty decided on that course of action). The hospice nurse decided she had a touch of pneumonia and began giving her antibiotics the day before she died. The next morning she had breakfast, then was put back to bed for a nap. When an attendant went in to check on her, she was dead. She went so quietly and peacefully. I arrived shortly after and waited for Betty to arrive (we'd become friends). Because she firmly believes in an afterlife, Betty was tearful, but almost joyous when she came in. She had spoken earlier of her great fear that her mom would have a slow difficult death . She invited me to come into her mother's room to view her, but first stopped in front of her parent's wedding photo on the memory shelf beside her door. "I know that Mom is now united with my father and with Jesus," she smiled through her tears. I envied her that faith. We went in (the two hospice nurses were with us) and Betty sat next to her mother. It was very peaceful. My husband and I attended the funeral last week, which was a large family gathering, full of stories. Betty's mom had been a high school P.E. teacher for over 30 years.

So, death seems to come when not expected, but often at the proper time.

Think of you and hubby (what a delightful man he seems from his writings)

Karen

Pauline said...
Again I cannot thank you all enough, and Dee, welcome. I hope your MIL does as well as can be expected.

Please keep those comments coming. I need them.

Daddy's Still Got Game

2008-04-01T12:19:00.000-05:00

Lewy was being rather stubborn today. One good day of food and that was enough apparently. I could not get him to eat more than 3 half teaspoon sized bites of the biscuit/gravy/bacon/fried potatoes and onions blend. It actually tastes the way you would expect it to taste if you poured gravy all over your fried potatoes and onions and popped a bit of biscuit in your mouth. Pretty good. Gravy is Daddy’s favorite food group.

Never the less today was not a gravy kind of day. He just looked straight at me, and plain as day said “NO!”

OK I can take “no” for an answer. It seems to me that somewhere there is enough of Daddy left rambling around in Lewy’s head to figure out his time is coming to an end. He wants to talk about deals and property and taxes, and who is shaving money off the top. These are important memories from the ’60-70-80’s.

Now, there is no more property, no more business, and no more employees to chase around.

It seems to me that if we are smart, we should find ways to divest our brain of all these plagues that stress us out until the day we die. Wouldn’t dementia be much more pleasant if you worried about fishing instead of workers everywhere? Or how much of it is just Daddy’s personality trait of being paranoid about everything and everyone?

Even though Lewy would not eat or drink to my satisfaction, it was in fact a wonderful day. Lewy announced very loudly that he had to shit. Wonderful! We’ve been wondering when our little brown friend would reappear…it’s been several days, maybe a week since there was a bowel movement.

You might ask; why is this so wonderful? Good that his bowels are working, but wonderful!?! That’s a bit of a stretch, perhaps?

No my friends, wonderful!

This announcement came about 30 minutes before Yvonne was due to arrive for his thrice weekly bath. Oh yes! What perfect timing!!

“Come on Daddy….See if you can’t squeeze it out now, before we get you cleaned up…” A little coaching goes a long way with Lewy’s. He had gotten confused and was by then trying to hold it in.

Thirty minutes of “coaching” and the blessed event happened. It was perfect in form and in timing. Yvonne had shaved him, washed his entire body and was preparing to clean his rear when the lump-o-poo arrived. We both patted him on his legs and encouraged him to push a bit.

“Try to get it all out Daddy. We ( I ) don’t want you to mess yourself after Yvonne gets you cleaned up.”

Daddy pressed down. Buuurp! Just some gas. Buurrrrpt! More gas. I think we are done…nope a little plop! Success! A complete empting, and all right there on the old diaper, cleaned up in seconds and butt waxed down with zinc oxide and re diapered. Yvonne is magnificent!

She finished up her work and walked around to the head of the bed to say goodbye to Daddy. “Goodbye Mr. Lewy; I will see you Wednesday…OK?”

“OK, Doll. You come back anytime. Maybe we could unumu muonn dancing.”

That’s my Dad. He can’t say anything understandable in days but when its time to flirt. He’s still got game.

1 comments:

Stella said...
Glad to hear Mr Lewy is trying to make time with the ladies. He knows how to get good care. No one can resist a little attention. Its a Win Win situation all around. Goodnight, Mr Lewy and sweet dreams. May you dream of all the happy times gone by.

Condition Update

2008-03-31T12:18:00.000-05:00

Today was one of those now rare days when Daddy was somewhat lucid. He ate more food than he has in the last 3 days combined and drank several glasses of juice/Ensure/chocolate Milk. I made him biscuits, bacon, fried potatoes with onions, and gravy. All of that went into the blender and came out a rather pasty brown blob, but Daddy gobbled bit up along with two fried eggs.

After eating he wanted to talk about his business and how much he sold the land for. Where his money is and who’s watching the store. He’s very worried about the business all the workers and being sure no body cheats him and that everyone got paid. It seems running your own business never ends. I’m glad I’m just a working stiff. Now maybe all I will worry about is not getting fired or meeting my deadlines. Much less stress than having to always be meeting payroll.

Days like this are wonderful in that there are those passing moments when it’s Daddy not Lewy talking, and you think, “He’s getting better!’…but he’s not. Even in stage seven, Lewy has a stage 6 day now and then. After all the disappointing upturns in the past, I know that this one will only be fleeting then the aftermath is always a deeper downturn.

I am being better about wetting Lewy’s mouth and lips. But I’m being more like I think a nursing home would be by giving him his “meds” when he probably doesn’t need them, just to give myself a break from the constant babbling and questioning that goes on while Lewy is awake. I’m becoming a church mouse. No noise! No noise!!

Lewy does not know what decade it is. He does not know where he lives. He thinks we are plotting to make him go somewhere else. It must be frightening to not know where you are or if you are going to be tossed out any minute. Lewy tries to bargain with us about the worth of the work he does around here. I’m not positively clear whether he is referring to when he really did put in a hard days work here every day or if in his dreams he’s working hard…probably both. He figures he’s earned his keep because of his sweat contribution.

No doubt he has.

Tomorrow the Hospice ladies return, Maybe the suction will come off the right foot.

2 comments:
Stella said...
Hold that thought about the suction coming off. He will have more freedom... more freedom to run his business. I'm sure the extra income will be helpful.

old friend said...
I'm out here...thinking of you,Pauline...no ringy dingy's!!!

1.2 Pictures

2008-03-30T12:14:00.000-05:00

Hubbie here.

I haven’t written much lately. You may have noticed that I tend toward the less serious side and lately things have not been particularly lighthearted. Today has been about the same, some good some bad, nothing funny…………except to Lewy. For some reason my conversations with Lewy of late often end with him laughing. I don’t know why he is laughing. Heck, at least half of the time I have no idea what we are talking about. The other half of the time I have a vague idea of the topic but I’m puzzled by the words. He still talks about the other people. He still wants to get out of bed. Basically what you and I would talk about if we were confined to bed and strange people kept coming by.

There does seem to be a lot of business going on. Pauline and I are often urged to watch over the workers and to let Lewy know when we will be gone so that he can keep an eye on them. I don’t worry about them so much. I mean really, they are imaginary so anything they steal is imaginary. If they start stealing real stuff, then I’ll be pissed.

We have talked here before about “relative age”; childhood age as it equates to how we act when we are ………”up there”………”senior”………..”elderly”…………you know…………….old. It is an easy comparison to make. At what age did you learn to walk? At what age did you learn to talk? At what age did you stop wetting the bed? At what age did you feed yourself? At what age did the drywall guys start working over your bed? At what age did they install the elevator in your kitchen?

I think we can add another question to the list; At what age did your sentences start making sense? Of course the relative age question is the opposite; At what age did your sentences stop making sense? Pauline has shared some of the conversations with Lewy. He hasn’t made it to Crazy Aunt Tom’s level yet but he has offered up some interesting observations.

“We got to paddle as we go.”

“Paddle as we go?”

“Yeah. We got to keep our paddle feet moving.” (Pauline says that this means to move your car in Flintstone fashion.)

“I’ve ordered seventy thousand dollars worth of dogs.” (We love dogs but….Come on!!)

“Eating puts me in danger of the highway department.” (Don’t eat and drive.)

But then, was it not President Bush that said……………………..

“I'm honored to shake the hand of a brave Iraqi citizen who had his hand cut off.” (See that way the Iraqi citizen doesn’t even have to be there. Makes for an interesting visual doesn’t it. I mean, would you shake the hand like there was a person attached or would you wave it in the air?.........Maybe do it like a martini shaker.........Hey………….Don’t look at me that way,……………. it was the President’s idea.)

Of course none of the above holds a candle to Crazy Aunt Tom’s declaration that……….

“I can’t use this phone. It has the wrong language on it.” (Our phone was just one of the reasons that she refused to live with us when Lewy’s Twin Sister came to live in her head.)

All of us say stupid things. Some of us say smart things. So, not having much place else to go with this post let me offer you a few of my favorite quotations.

"You can safely assume that you've created God in your own image, when it turns out that God hates all the same people you do."--Anne Lamott

It needs to be stated again and again that the fundamental job of the president is not to protect the people of America, but to protect their constitution. – Andrew Sullivan

As societies grow decadent, the language grows decadent, too. Words are used to disguise, not to illuminate, action: you liberate a city by destroying it. Words are to confuse, so that at election time people will solemnly vote against their own interests. -Gore Vidal

"There are many in America today who have little sympathy with those we torture and torment. They are our enemies, they say. They would do worse to us if the situation was reversed. Maybe so. But those young men and women who we have turned into torturers and inquisitors, they were soldiers once. What are they now?" - Jay Elias, Daily Kos

Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover. - Mark Twain

Tell me, and I will forget. Show me, and I may remember. Involve me, and I will understand.Confucius

The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function. - F. Scott Fitzgerald

Nearly all men can stand adversity, but if you want to test a man’s character, give him power.Abraham Lincoln

If you would not be forgotten as soon as you are dead, either write something worth reading or do things worth writing. - Benjamin Franklin (1706-90)

Women and cats will do as they please, and men and dogs should relax and get used to the idea.-Robert A. Heinlein

Try not. Do. Or do not. There is no try. -Yoda

Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes. - unknown

It’s only seems kinky the first time. – Bumper Sticker

And this one from a book that I read several years ago but I lost. All I have is a copy of this passage. If you know the piece please let me know. I would love to give proper credit.

“Ah,” Tagore said, raising his eyebrows. “It is magic you wish to perform.”

“Your kind of magic.”

The old man nodded. “Come’” he said. He led Justin to a small stream near the thicket of rhododendrons and picked a hand-sized rock of the ground. “If this rock were made to disappear – not hide, but disappear completely, never to exist in the form of a rock again – would you consider such an act to be magic?”

Justin looked the rock. “Yes,” he said.

“Very well.” Carefully he placed the rock in the middle of the stream.

“What did you do that for?”

“It is the magic you requested,” Tagore said. “I have placed the rock in the water. You see it now but in a century the rock will be gone, disappeared forever. The flow of the water will have worn it to nothing.”

“I get it.” said Justin, disappointed. “There’s no magic.”

“You are wrong, my son,” Tagore said quietly. “It is all magic.”

As for the most purposeful, most touching, most beautiful collection of words I have ever read please see Stella’s reply to Pauline printed in the 3-27 post, called “Letters”. I kneel in your presence Stella. You are an Angel. Capital “A” intended.

5 comments:
kddove said...
Grandmaster, Warren Murphy and Molly Cochran

Page 75
"Your kind of magic." The old man nodded. "Come," he said. He led Justin to a small stream near the thicket of rhododendrons and picked a hand-sized rock ...

Stella said...
As an adolescent, I kept a scrap book of sayings by important people. I didn't understand half of what they meant but it sounded important. Your entry of today brings that back to my mind. Oh, I wish I had that book. Your words about my thoughts to Pauline are too kind. Pauline has helped me more than either of you will ever know.

Hubbie said...

kddove, I am VERY IMPRESSED. I did not expect an answer but the minute I saw the title I knew you were correct.

Stella, I kept the same information. I hand copied it into a notebook. To this day I have to read from paper, I can't read more than one page from a monitor. But the notebook I wish I had not lost is the one where I chronicled the graffiti in the Undergraduate Library. there was some good stuff there.
But my dear Stella, my words were in no way too kind. Help is a two way street. Pauline's writing help her, and you, and me, and hopefully, many other people. But your words in that letter....Oh my god......Stella they were perfect. Bless you my dear lady. You and Freddie will stand beside your God. I have no doubt of that. No doubt at all.

kddove said...
google is amazing. i put in "tagore, justin, magic" and it went there...
i wish i had all that in my head!!!!

Life Line

2008-03-28T11:33:00.002-05:00

Lewy seems to have taken up pretty much permanent residence in Daddy’s head. Even when he talks (or tries to) about something real, he can’t formulate enough words to make it understandable. The nouns always seem to be missing.

The wound nurse came by and redressed Daddy’s feet. We were able to remove the suction on the left foot and maybe we will be able to remove the suction on the right foot Friday. I sure hope so. It’s difficult to change the dressings, it hurts Daddy when we do it, the pump is noisy, and it restricts Daddy from being able to move around.

She also thought we might try to sit him upright for a bit and see if he thinks he wants to try to stand up. It would be so nice, if I could just get him out of the bed into a wheel chair. It is amazing, I never thought of a wheel chair as being a “freeing” object before. (I’m slow, obviously. Or perhaps incredibly lucky) I’ve never had to think of wheelchairs that way before. I’ve always thought of the restrictions one has to deal with when they are confined to a wheelchair. Never again will I look at a person in a wheel chair and feel sorry for them. I will look at them and know how grateful they are to be able to get into one.

Daddy’s old girlfriend June came by to visit yesterday. She happened to arrive just as a friend of mine arrived, so my friend and I sat outside in the warm spring sunshine while June, a retired nurse, checked in on Daddy.

It was nice to sit outside and chat without worrying about what was going on inside with Lewy. Unfortunately, it was Lewy that greeted June, so she talked to him a while, reminded him of who she was, but reported to my friend and me that she didn’t think he ever realized who she was.

Too bad. He had been asking about her by name a few days before. I wish he on some level realized it was June…….Perhaps he did, now that I think of it……The covers were completely re-layered which no doubt means he had removed them for her. That will teach her to come visit!

Lewy on the other hand doesn’t seem to care who he gets nekked in front of. He grabs those covers one by one and flings each of them with the authority of Gypsy Rose Lee slinging off her gloves. I keep expecting to hear “The Stripper”.

Occasionally, we get a good leg lift to emphasize the toss.

This blanket tossing is of course what the anti anxiety meds are for. So I give him some anti anxiety meds. A bit later I give him pain meds. Even after the drugs he still wants to twist up that cigar, pull on the bed clothes, and cling to the bed rails. At the prescribed intervals I give him his meds that do eventually calm him down into a deep sleep.

Now, as I go by his bed I take an eye dropper to wet his lips every few minutes. He breathes through his open mouth so even in a deep sleep, his mouth responds, sort of a pucker, to the drops and “asks” for more.

I play the old Swing Kings very softly off the TV CD channel, no talk no commercials. It seems to ease him a bit. At least his generation had good music. Imagine the children of today’s kids playing hip hop through a boom box to settle Granny down…Kinda makes me smile just to think about it….Progressive Rock for me, with a good dose of Heavy Metal just for kicks, please. And some Buffett. Gotta have some Buffett.

I was so looking forward to this morning. It was an unusual nexus of events that meant I could sleep late. Oh yes, sleep until 8 AM maybe….

2:30 AM. Daddy is coughing up a loogey. I hear him spit it. I ain’t gettin’ up.

3:12 AM Daddy is gurgling very loudly, again I hear the propulsion of goo.

3:58 AM more wheezing and propelling.

This went on all morning. I finally gave up and tried to mentally prepare myself for the mess there would be to clean. I knew from experience to check the glare on the hardwood floor; and Lo and Behold! A goo mine-field. The decision to not get up earlier was probably a mistake. Re-wetting phlegm for removal is disgusting. I gagged for a long while. I manage in my old age to not vomit, but I can’t stop the repeated gagging.

After I got the floor cleaned I approached the bed. There were clumps of the stickiest ……oh it was awful….just awful….So much for my much anticipated morning sleep in.

After I cleaned the mess up from Lewy’s shoulders, face, and bed, I went to the kitchen to crush his pills and make his breakfast of pureed sweet potatoes and chicken with rice, with Ensure on the side.

By the time I got the food set down on the bed side tray Lewy had fallen fast…. and very deeply…. asleep.

Down to the bottom,
Hello
Is there anybody else here?

It's cold and I'm so lonely,
Hello!
Is there anybody else here?

Hello (Hello, Hello, Hello)
Won't you throw me down a Life Line?
I'm so afraid of darkness,
And down here it's just like night time.

Oobelie, Ooobely, Oogolie,
Oogolie, Oohs..Are all around me.
Hello!
Will you please send down a Life Line?

Down,
And there isn't any hope for me,
Unless this dream which seems so real,
Is just a fantasy.

Life Line
by Harry Nilsson

Thank you Harry…
.
Listen: http://www.youtube.com/watch?v=G1w1WLUDPUM

3 comments:
old friend said...
Now I know you would want some Leon in the mix!

Stella said...
Oh, my dear, the generational gap is showing but what a trip for this granny. I'll join Mr Lewy with his soft music but I got a sad chuckle for the little guy at the rim.

Stella said...
His feet are improving???!!!! Good for you, Mr Lewy!

The Last Stages of Life

2008-03-26T11:24:00.000-05:00

I found this while Googling for some information on what to expect for Daddy's final days. It is a bit morbid, but I feel I need to know what to expect. I've never been exposed to the day by day hour by hour observance of death.

I thought I would share this article from a Hospice group in Hawaii.

The Last Stages of Life

The last stages of life can be very stressful for the dying person and those caring for him/her. You will observe changes that may be upsetting and unfamiliar. Learning about the dying process will help. Many physical changes occur during the process of dying that affect the emotional, social, and spiritual aspects of a person’s life.

There are some signs and symptoms of dying that are observable, although not everyone follows a predictable sequence of events or stages.

Health professionals speak of “dying trajectories” that suggest how persons with specific diseases will die. For example, those with a terminal illness, such as advanced cancer, will show a steady decline toward death. Those with serious chronic illnesses may have peaks and valleys that sometimes give the impression of recovery.

Remember that each person’s death is unique.It is helpful to understand the common symptoms experienced in people who are dying. You may observe none, some, or all of these symptoms in the dying erson’s last days and hours on earth. You will also learn things to do that can help ease physical pain and suffering.

Withdrawal from the External World

As the end of life approaches, there is a feeling of detachment from the physical world and a loss of interest in things formerly found pleasurable. There is a tendency to sleep more. There is less desire to talk. This is the beginning of letting go of life and preparing for death.

Days or hours before death, the dying person becomes less and less responsive to voice and touch and may not awaken. Sometimes, quite unexpectedly, the person may appear well and even look as if he/she is going to recover.

The person may be alert and talkative. This does not mean that there will be recovery; the person is still dying. Use this as a “window of opportunity” to say what you need to say and have closure.

What you can do:• Always speak gently, and identify yourself before speaking.• Use gentle touch and provide reassurance.• Dying requires energy and focus. Try not to distract the dying person from this necessary preparation. Allow time for silence. • Remember that you are supporting the person to “let go.”

Visions and Hallucinations

Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who have died is common. These visions are considered normal. The dying may turn their focus to “another world” and talk to people or see things that others do not see. This can be unsettling, and loved ones may not know how to respond.

What you can do:• Do not judge or be critical of what is happening. Just be as silent and supportive as possible. • Refrain from discounting the experience and orienting the dying person to “reality.” This is their reality. Most often, these “visions” are reassuring, and they comfort the dying. Rarely do they upset the dying person.• It is important to differentiate visions from hallucinations or “bad dreams” that may be caused by medications or metabolic changes. While visions of loved ones are generally comforting, “bad dreams” may frighten the dying person. Alert the doctor or nurse about “bad dreams.” An adjustment in medication may correct this.

Loss of Appetite

As death nears, the dying person may lose interest in food and drink. The ability to swallow becomes impaired. Loss of appetite and reduced intake are normal parts of dying. In the early stages of dying, the dying person may prefer only soft foods and liquids.

In the very last stages of life, however, they may not want any food or drink. A dying person may want to suck on ice chips or take a small amount of liquid, just to wet and freshen the mouth, which can become very dry. In the last stages of dying, forcing food when the body says “no” may be harmful or painful to the dying person. Many dying persons will exhibit the “clenched jaw” sign as a way of saying “no.” Forcing fluid may cause choking, or the dying person may draw liquid into the lungs, making matters worse.

It is hard for most people to respect the dying person’slack of appetite. That’s because many of us equate foodwith caring. Family members may feel that withholdingnutrition is cruel or neglectful. They may worry that theyare “killing” their loved one.

It is important to remember that as the physical body is dying, the vital organs are shutting down, and nourishment is no longer required to keep them functioning. This is the wisdom of dying, and the body knows exactly what to do.

What you can do:• Refrain from giving liquids or food unless requested.• Wet the lips and mouth with a small amount ofwater, ice chips, or a sponge-tipped applicatordipped in water.• Protect lips from dryness with a protective lip balm.• Continue to be a caring and loving presence.
Now, I have no choice but to see with your eyes,so I am not alone, so you are not alone.–Yannis Ritsos

Change in Bowel and Bladder Functions

The two major concerns are constipation and incontinence (loss of control over bowel and bladder functions). Constipation may be caused by lack of mobility, pain medication, and decreased fluid intake. If left untreated, fecal impaction may occur and can become uncomfortable. Laxatives are generally needed to keep the bowels clean.

Incontinence, or loss of bowel/bladder control, is likely to be distressing to the dying person and those in attendance. In the early stages, “accidents” can occur. Asdeath nears, the muscles in these areas relax further andcontents are released. This is normal. Urine is highlyconcentrated and sparse and may look tea-colored.

Sometimes a urinary catheter is inserted, or the dying person may wear “diapers” or briefs. This will help keep linen clean (changing linen may be more disturbing to the dying person than the catheter or the diapers).

What you can do:• Keep affected areas clean and dry to avoid rashes or bedsores.• Watch for signs of constipation and incontinence, and help loved ones report this to the physician or nurse.• Talk to the doctor or nurse about the advantages of reducing food and fluid in the last stages of dying.

Confusion, Restlessness, and Agitation

Restlessness and agitation are common. These symptoms may be caused by reduced oxygen to the brain, metabolic changes, dehydration, and pain medications.

“Terminal delirium” is a condition that may be seen when the person is very close to death, marked by extreme restlessness and agitation. Although it may look distressing, this condition is not considered to be painful.

There are medications available to control symptoms. Be aware there may be unfinished business. Dying persons may try to hold on until they feel a sense of security and completion. Picking, pulling, and fidgeting behaviors may also be seen. This can result from medications, metabolic changes, or decreased oxygen to the brain.

What you can do:• Never startle the dying with bright lights, harsh tones, or abrupt movement.• Always identify yourself. Even if the dying personknows you well, he/she might not recognize you atthis time.• Use a gentle voice and reassuring touch.• With mindful awareness, be sensitive to any cues that might signal that there is something the person wants to resolve before he/she can let go. Offer support.• Consider the use of light massage and soothing music.• Ask the doctor if there are any medications that might help relieve the agitation.

Changes in Breathing, Congestion in Lungs orThroat

You may observe that breathing is shallow and quickened, or slow and labored. The person may make gurgling sounds, sometimes referred to as the “death rattle.” These sounds are due to the pooling of secretions and an inability to cough them up. The air passing through the mucus causes this sound.

The breathing pattern most disturbing to witnesses, called Cheyne-Stokes breathing, is marked by periods of no breathing at all (up to 45 seconds), followed by deeper and more frequent respirations. These respirations are common and result from decreased oxygen supply to the vital organs and a build-up of waste products in the body.

This condition is not uncomfortable or painful for the dying person, although it may be unsettling to observe. The “death rattle” or Cheyne-Stokes breathing indicate that death is near.

What you can do:• Do not panic. This can increase any fear that may already be present for the dying person.• Raise the head of the bed (mechanically or with pillows) to help breathing.• If secretions are pooling in the mouth, turn the head and position the body so that gravity can drain them. Suctioning rarely helps and is not recommended.• If appropriate, wipe out the mouth with a soft, moist cloth to cleanse excess secretions.• Speak gently and lovingly, and use gentle reassuringtouch to ease fear.• Alert the doctor or nurse if breathing is especially labored or if you notice the “death rattle” and Cheyne-Stokes breathing.

Change in Skin Temperature and Color

As the body dies, the blood moves away from the extremities toward the vital organs. You may notice that while the extremities are cool, the abdomen is warm. You may notice changes in body temperature.

The dying person may feel hot one minute and cold the next. As death approaches, there may be high fever. You also may see purplish-bluish blotches and mottling on the legs, arms or on the underside of the body where blood may be collecting. As death nears, the body may appear yellowish or waxen in color.

What you can do:• Try to keep the person as comfortable as possible.• Use a damp, cool washcloth to cool a person who feels too hot (be alert to signs such as kicking off the blankets).• Cover the dying person with a blanket if he/she feels too cold. Don’t use electric blankets or heating pads, as these may burn the skin.• Alert the doctor or nurse if you notice changes in skin color. This may be a sign that death is near.• Using a fan to circulate air may make the person more comfortable.

Tips for Caregivers

You can be a caring presence throughout the dying process. Your presence for the dying person and his/herloved ones indicates loving kindness, compassion, andwillingness to provide practical help.

Learn. Learn what you can about the dying person’s illness and the dying process so you can provide comfort and assurance.

Realize your limitations. No one is perfect. No one can do everything. Get help when you need it. Take a break when you need one. Encourage the dying person and his/her loved ones to call the doctor or nurse with questions.

Managing Physical Pain

Most physical pain can be controlled. No one should die in pain when the means to relieve it are available. All persons have the right to have their pain controlled.

Pain is real. Always believe a person who says he/she has pain. Remember that each person is an individual and perceptions of pain differ.

Talking to the doctor. People should expect their doctors and nurses to ask these questions about pain:• Do you have pain?• Where is it? What does it feel like: dull, stabbing, throbbing, etc.?• How intense is the pain? Please rate it on a scale from 0 to 10, with 10 being the worst pain you’ve ever had.• What makes the pain better or worse? The answers to these questions will help the doctor prescribe the right medicine in the right amount. Before the conversation is over, make sure that the dying person and his/her caregivers understand:• What may be causing the pain• The recommended treatment• The possible side effects• What to do if there are questions or concerns

True love is not a feeling by which we are overwhelmed. It is a committed, thoughtful decision.– M. Scott Peck

Hospice Death

Hospice care can be given in the home, nursing home, hospital, or residential facility. There are 7 hospice programs in Hawaii. Hospice care is available on every island except Niihau and Lanai. On Oahu, there are 3 dedicated hospice facilities, two affiliated with St. Francis Hospice (The Sister Maureen Kelleher Center and the Maurice J. Sullivan Family Hospice Center), and the Hospice Hawaii Kailua home. Several hospitals across the state work with local hospices to provide hospice carein the hospital. In the hospice philosophy, death is held as a natural event, not a medical event. “Care” not “cure” is the goal.

When hospice is provided in the home, family members become the primary caregivers. When possible, at least two family members or loved ones should share the responsibilities of caregiving. Hospice staff visit the home on a regular schedule. They are on-call (available round-the-clock) to provide support to the entire family. The hospice interdisciplinary staff includes doctors, registered nurses, social workers, chaplains, home health aides, and volunteers so that the dying may receive holistic, comprehensive care. Hospice nurses and doctors specialize in easing pain and suffering.

Physical and occupational therapists also can assistpatients to be as mobile and self-sufficient as possible.Music therapy, art therapy, counseling, and othertherapies are also available. Hospice believes that emotional and spiritual pain are just as real. Counselors, including clergy, are available to assist family members as well as patients.

You can give your whole attention only when you care, which means that you really love.– J. Krishnamurti

Saying GoodbyePersons who are dying often want “permission to die” from those they love. Often, they want to be assured of five things:• Things they were once responsible for will be taken care of.• The survivors will survive without them.• All is forgiven.• Their life had meaning.• They will be remembered.

Saying good-bye is not easy. Yet, it is important for the dying person and his/her loved ones to do so. Take advantage of opportunities when the person is awake and communicative to facilitate the “saying good-bye” process.

If the dying person is not lucid, or in a coma, remember that hearing is the last sense to leave. Assume everything you say can be heard and understood, even if the person is not responsive. Never speak about the dying person as if he/she was not in the room.

Some people feel comfortable lying in bed next to theirloved one as they say their parting words. Others may want to simply hold hands. If music, chanting, or prayer is used to assist the dying, let it be comforting and familiar,making way for gentle passage. The dying person’s body language will let you know if these sounds are welcome and soothing.

Even with all the preparation and knowledge that death is coming, the moment of death is not easy to see. Even those people who are closest to the dying person may choose to be absent. The decision to be present at the moment of death depends on many things. Do not judge others if they choose not to be present at the moment of death.

Being Present at the Moment of Death

It is not uncommon for the dying person to wait to die until loved ones have left the room. Make sure you allow for this. Sometimes, if a person seems to be holding on, you may simply say, “I’m going to leave the room for awhile. I love you.”

In some cultures, specific prayers, sutras, or other rituals,may ease the passage to death. These may be comforting both to the dying person and to his/her family. Ask your clergy person for assistance.

Work of sight is done.Now do heart work on the pictures within you.–Rainer Maria Rilke

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Original article may be found at: http://www.kokuamau.org/laststages/index.htm

1 comments:
oldfriend said...
This is a well written article and explains what to expect. I know we felt empowered in knowing this major signs. The description of the 'death rattle' is accurate. Thanks for sharing this.

Nurse Goodbody

2008-03-25T11:20:00.000-05:00

Lewy took a bit of a vacation yesterday and allowed Daddy a few moments to come out to play. It was a normal morning with Lewy. Fussing over not wanting anything to eat or drink. Just being plain stubborn if you really want to know the truth. I couldn’t even get him to eat that marvelous coconut pudding I made just for him. (It was so light and fluffy too. I’ve learned a lot from watching the Food Network.)

After an hour wrestling match to get some food in him, I gave him his anti anxiety meds, or my High Anxiety Meds…which ever you prefer…Yvonne, the beautiful South American lady was due out shortly to bathe him and change his bed. This woman is so incredible. She is gentle with him and so soft spoken and polite, and so thorough. I normally give him his anxiety meds before she comes so he won’t be so hard to handle. Sure enough, he was willing to cooperate when she came. Other than trying to latch onto her, me, the bed rail, and the wall with his vice grip, he behaved very well. No poop today. Damn! Yvonne always gets the clean days….

After his bath, Lewy fell fast and deeply asleep. Ah, the peace of the morning!

The phone rang. As I run for the phone, I see it has disturbed Lewy. Maybe I can get there before he gets rousted too much…..After the call, I tip toed around to peek…No, no such luck, Lewy was waving his arms in the air. I got him some Coke and it settled him down a bit. The first time he’d asked for Coke in a month. After a few more minutes, Lewy was sleeping again.

The phone rang. Oh Damnit!! I race to catch the phone. Again it rouses Lewy enough that he starts hollering about what am I doing while I’m still on the phone. Telephone conversations seem to really upset him. After a talk with the office, I went back in to check on Lewy. “Who was that? What did they want? Is there a problem? Did everyone get paid?”…..Lewy always worries about the job, the workers, and getting everyone paid…”No, Daddy, I was my office, everything is fine everyone got paid.” As soon as I got him settled…yep…the phone rang again…On a normal day, the phone might ring twice, if that. Yesterday was at least a 10 ringer….All day long.

Needless to say Lewy was agitated. It was getting near the time that Nurse Goodbody would arrive. I gave him his pain meds, because she has to scrub out the sores on his feet until they bleed. I’m sure it is very painful. Lewy dosed off.

Lewy continued to sleep and Nurse Goodbody was late. Very late today. By the time she arrived, Lewy’s pain meds were wearing off and there would not be enough time for a new round to kick in before the scrubbing commenced. So we decided to just rough it.

Nurse Goodbody walked around to the side of Lewy’s bed just in time for Daddy to wake up and be alert. She put her hand on his forehead and was saying some nice sweet things to him, when he rose up his arms for a hug. Next thing she knew Daddy had her in a bear hug pulling her down to him for a little smooch. Yep that’s Daddy…”I told you he was a dirty old man!”

Nurse Goodbody was finally released from his grip....maybe there had been a grope too. I would not be the least surprised.. She stood up, straightened her shirt up, looked down at Daddy and said…”Ooo you are a rascal aren’t you?”

She did all the nurse duties, then we set about to change his bandages on his feet. Normally Daddy is so drugged through this procedure he tends to nap through it…This time…Oh my; he was wide awake…When Nurse Goodbody took the pads and started scrubbing his open wound, Daddy almost raised up to a sitting position…”Ooooooooo!!! I didn’t do anything to deserve that!”

We both had to laugh. “Daddy, I told you - you best leave these nurses alone, they will hurt ya.” Nurse Goodbody smiled and nodded her agreement. After much pain and effort we got Daddy’s feet re bandaged and hooked up to the pumps….no leaks….yeah! Got it the 1st time…

Nurse Goodbody when back to Daddy’s bedside to tell him bye and that she was going on vacation and another nurse would be here Wednesday and Friday. I was standing across the bed from her during her goodbye speech. “Daddy, Nurse Goodbody is talking to you, why don’t you turn your head and look at her?” For some reason, Daddy never faces over to his right. I’ve tried many times to get him to look out the window at the buttercups, but he just would not do it.

Daddy stared at the ceiling for another 10 seconds then turned his head toward Nurse Goodbody, and his face just lit up. “There you are…” she said reaching over to pat him on the head. “I’m leaving now…”

Both Daddy’s arms went up for the hug and kiss goodbye, to which she happily responded. After the short embrace, Daddy looked her right in the eyes and said “I’ll miss you.”

Nurse Goodbody, smiled looked at me and said “Oh he is so sweet.”

“No, Nurse Goodbody, he is a Dirty Old Man…and proud of it.”

Daddy just smiled. The first smile I’ve seen since the surgery.

2 comments:

pearose said...
Twinkle eyes (my new name for Lewy) seemed to have a good day yesterday!

I almost called you yesterday, too, but thought better of it with Lewy most likely sleeping.

Maybe he'll look out the window today to see the flowers, which I'm sure count into the hundreds by this point.

oldfiend said...
oops!!! I did enjoy the vette story though!

Grieving In Reverse

2008-03-24T11:19:00.000-05:00

After struggling with Lewy to get an egg and some tomato juice down for his breakfast, I gave him a good dose of his pain meds so Hubbie and I could clean him up and change his dressings.

It seems that whenever I give him the pain meds, he starts rolling his covers up in that daily cigar. Lewy rolled his sheet into a very tight precision roll. I could not have done a better job of getting a tight roll even with my best effort. Lewy twisted the covers, stared at the ceiling, and mumbled to the people he saw flying over his bed.

When the meds kicked in enough to relax him, he let go of the covers, and raised his hand up and out in front of him, and felt of things, slapped at them, made swimming motions, and pointed up at the ceiling fan. There is something about the fan that has captured his interest; unfortunately, I can’t position him in the room where he doesn’t see it, except for having him face away from us toward the wall.

Finally, he began to sleep. Hubbie and I sanitized our hands gloved up for the procedure of redressing his feet. I removed the right boot and peeled the old dressing off. Daddy howled…I looked up and asked if that hurt, but he appeared to be asleep again before I could finish the question.

We went about our duties of dressing both feet, changing the hoses, replacing the Y connector, and restarting the pump……Success! No leaks…As we were putting the boots back on, I noticed that Daddy has developed another pressure sore on his right foot. This one could only have been made by having the boot up against his little toe. I don’t see that the heels are getting any better, no worse, but not better.

We rolled him over and changed his diaper. This is not so easy. Even with as much weight as he has lost, he’s still a heavy man. Hubbie pulled him over toward him so I could wipe his bottom, and clean him up. His tail bone area is broken open now with a pair of bed sores on each side of his spine. He doesn’t complain of pain…but it has to hurt. No wonder he always has a frown on his face.

After we finished rolling him around, he fell fast asleep and slept for about 6 hours. As is somewhat normal with Lewy’s he acts out his dreams. Hubbie calls it “conducting”. I sat and watched him for a while. His face is sunken in noticeably more than it was week ago, and his arms have grown thin. He kept trying to sit up; reaching up and attempting to lift his head. He managed a stiff upper body lift, but his head was not following. He could barely get his head to lift at all.

I end up crying when I watch him this way. He is so weak and frail. It seems I’m grieving in reverse. When Momma dropped dead the shock was overwhelming. I cried and cried. Every time I found myself alone the tears would flow. Everyday for a long time, then I realized there was a day I did not cry. Gradually those days crept in and became the norm. This is just the opposite; it started out with a few tears here and there, but is ending up with daily crying sessions, several of them. As each day passes it seems they come more often.

I wonder if this means that by the time Lewy beats Daddy, if I will be through crying.

Maybe; just maybe. By then, I suspect Daddy will have been gone for a good while, and it will only be the end of Lewy.

Funny how now that it is time for Lewy the Unwelcome Guest to leave, I don’t want him to go.

2 comments:
Stella said...
I think you have the right idea about "Grieving in Reverse". Never deny your grief. To deny your grief would be to deny your love of the whole Daddy. The Daddy who loved you enough to be strict and stern when he tried to be a good daddy. When you came to him, he had no instruction sheet to go by [for raising you] no more than you have an instruction sheet to deal with caring for him. You both have done the best you can and its left up to you to tie up all the loose ends. The angels are with you.

oldfriend said...
Wow Stella, well written! And Pauline, days rambling is right on. Just remember tears are a gift.

A Christmas Story

2008-03-23T11:16:00.000-05:00

Lewy is getting madder and grouchier every day. He wants to get up and out of bed, but with the hoses coming out of his feet and the catheter it just does not seem likely.

Therein lies the big dilemma. Do I try to heal him to get him up and about? Or do I drug him to keep him comfortable? If I drug him, he won’t eat or drink enough to thrive. If I feed and nurture – get his sores healed – and get him off the catheter, which will take several months according to the nurses; to what purpose really?

By then he will not know who he is or have any memory of his family or life. He told us back when he has thinking clearly, never to prolong, never to hook him up. It sounded so simple at that point in time. All very neat. Very logical. Clean.

But now, when I’m standing there looking at my Father, it does not seem so easy any more. Lewy drives me crazy with the fussing and hollering and demented conversations about nothing and everything all at once. But yet, he is my Dad and he’s all I have left of my immediate- blood- family. Other than him, I have only my nephew and my Crazy Aunt Tom.

So is that it? Is it pure selfishness on my part to try to prolong his life, no matter how miserable he is? I know he won’t really get any better. At best, he might sit up in the bed or stand…but walking…No.

He was barely doing that before the surgery.

Today I will drug him heavily. We must clean him and change his bandages. Scrubbing the raw meat in the foot sores until they bleed is too much to expect anyone to put up with out pain meds.

I suppose that’s the way it will go. Feed him one day….. Drug him the next.

Yesterday, for some reason Lewy asked me where my bike is. This threw me for a minute…actually long enough for him to drift off into La La Land…but it reminded me of my bike that I had when I was a kid in grade school.

------------
It was Christmas morning. I had gotten wise to the Santa thing the year or two prior, so I had no expectations of reindeer and sleigh bells. I also knew by this age that Daddy was kin to Scrooge and that Momma was responsible for all things Christmas.

As any normal kids we were up at the crack of dawn to run to see what was under the tree. Now that I think about it, I’m not sure why Momma persisted in the hiding the presents routine, since we both knew about Santa. But never the less the rouse was on…

We ran in and opened up all sorts of clothes (Yuk – Momma was practical. We needed clothes, why waste an opportunity like Christmas on toys). There was some candy but mostly things I could have cared less about, socks, shoes, some school supply things. Very boring.

Certainly at that age, I’m sure my acting skills were not refined to point of convincing either of the parents that I was not terribly disappointed in what “Santa” brought. I took my new things to my room, and put them up. (Or threw them down…)

I was so very disappointed. I don’t know what I expected, because I knew that “Money doesn’t grow on trees”…yes… heard it many times… We sat down to breakfast, ate, and Momma then proceeded as always, to clean up the kitchen. Daddy went to settle into his recliner for a day of rest from his otherwise 7 day a week job.

I went over and plopped down on the couch. I didn’t really have much to say about anything. I was sulking, and doing a very nice job of it, thank you very much… Daddy eyeballed me for a few minutes then told me to go out to his car and get his papers in the back seat for him.

Oh crap, I don’t want to go out there…I’m mad…I want to stay in the house, I want to pout. But as with most all kids in those days, if Daddy said do it, you did it right then, and you offered up no lip.

So I put on my coat and went out to his car, opened the back door and looked inside. There were no papers there, I didn’t see what it was that he wanted me to get. So I turned around and went back into the house, still sulking about, still mad at Santa.

“There’s nothing there.”

“WHAT!! WHAT DO YOU MEAN THERE"S NOTHING OUT THERE!?!” He bolted up from his chair. "It has to be in there….You didn’t actually go look did you?” The accusation;…always accusing me of not doing; or doing; whichever was the wrong move…

“I looked - there are no papers in the back seat of your car!!” I was mad.

He looked at me curiously…."Wasn’t there anything in the back seat?’

“Well, yes, there was a bicycle.” I stomped over to the couch, mad at him, mad at Momma, mad at the world.

I’m sure at this point Momma and Daddy must have wondered what on earth was going on in my head…Daddy asked me why I didn’t get the bike out of the car…

“Because it’s not mine;.... why should I?” I was getting madder. Not only did I get a bunch of crappy clothes for Christmas, but there was a really cool metallic blue girl’s bike with white handles and pink, blue and white streamers in his car that he was getting for someone else….

“Pauline…go get the bike. That’s your bike...”

I was stunned… “MINE!?!” I didn’t wait for an answer. I didn’t bother to close the door behind me either (Sin #1: Thou shalt always close the door behind you. - were ya being raised in a barn?) I ran to his car, flung the door open and started to pull out the bike. It had 24” wheels with white sidewalls…By now Daddy had come out to help. Momma was in the door watching.

We got the bike out and I had to get on it immediately…did not matter that I didn’t know how to ride. So Daddy held on to the rear fender and I sat on the bike while he pushed and I steered. It was wonderful!

After a bit of that we took the bike inside for Daddy to put the training wheels on. He was skilled with tools and made quick work of it. Then outside we went. Daddy was there every inch of the way until I got steadied enough for him to let go. I remember seeing Momma watching with her hand over her mouth…afraid I would break both of my legs no doubt.

Now you might be wondering how stupid can a kid be that would not realize the brand new blue metallic girl’s bike in her Dad’s car was not for her. But with Daddy, you never knew. He swapped and traded for all sorts of things and he also was big in the Masons, Rotary, and Lions Clubs. They were always getting things for kids that didn’t have much. So no, it never even occurred to me that it would be my bike. We couldn’t afford those expensive things; at least until that Christmas when Daddy, not Momma, brought me a bicycle for Christmas.

5 comments:
denise said...
I read your blog everyday (and love it) and have learned more from it than any support group on-line or off. My father died last October in his sleep from a number of things, none of which was dementia. We knew the end was near, there was nothing that could be done or say except to thank my dad for being my dad and to tell him over and over that I love him. It was very, very hard on the family when he died, peacefully in his sleep thank God. I think of him several times a day and am at peace knowing that I told him what I wanted to tell him and that he suffers no more. I know that he is in Heaven and just loving it.

First of all let me say that I admire the both of you tremendously for the care you have given your father. Caregivers always face the same dilemma that maybe we're not doing enough and are always feeling guilty when our emotions play into the situation. I'm facing the same situation with my husband as he, too, has Lewy Body with AD; his prognosis is 1-2 years. There are days when I believe he could go on much longer and other days I think it won't last out the year. What to do when the end is near? We all face this difficult decision when a serious illness strikes and early on it's easy to say what we would do. As the illness worsens, decisions become more difficult. I wish I had an answer for you. I was 11 years old when I met my husband and November will mark our 40 anniversary, God willing. Making the decision not to prolong a loved ones life is one that I can not be fathome. I pray that when my husband reaches that point that he peacefully dies in his sleep and joins my father in Heaven.

God bless you both.

kddove said...
i wouldn't have know it was mine, either....

Stella said...
We had such a horrible day with Freddie at the hospital yesterday, my heart was sad. When I sat down to read your post, the tears broke through as I wept for both Freddie and Mr Lewy. The bicycle story is a treasure. At the end of the story, my tears were tears of happiness for a younger Daddy and for you. Freddie has created a few miracles also for his three daughters and one son. Memories are golden. It helps so much.

oldfriend said...
I know through it all, you will make the right choices both you, Pauline and Hubbie. Thankfully, your Daddy spoke his wishes about prolonging his life. Every step you take now only serves to make a path for others to follow...bless your labors.

pearose said...
I really like hearing the stories of you and Lewy when you were together as Parent and Child. That brings us readers a new perspective of who Lewy is and of the bond between the two of you. Your Dad may be kin to Scrooge on one side, but he's kin to Santa on the other side - considering his joy at being able to give you a bike and his interest in helping out others less fortunate.

Rotel Tomatoes

2008-03-22T11:14:00.000-05:00

Lewy was pretty grouchy today. He started off refusing breakfast, and then got mad because he was hungry.

Fine.

I made him two eggs and grapefruit juice. He fussed all the way through the eggs and has taken to expressing his displeasure by spitting out puree or liquid, should it suddenly offend him.

Oddly though, no matter what, he opens and suckles the eye droppers with the meds. I thought the nurses said it tasted bad. I guess it’s probably awful, the way Lewy’s taste buds are. He got mad because there was sugar in all his food…pureed twice baked potatoes, white beans, hamburger & rice, orange pulp, and a 30/70 mix of Rotel Tomatoes and a fresh cucumber chopped to mush. I made it all from scratch, well except the Rotel, and there was no sugar put on any of it.

Now that I write that paragraph, I’m wondering why I spent the afternoon messing up the kitchen to make coconut pudding for him. It turned out nice and fluffy too…For some reason I guess a real sweet might suit him. As the nurse said, eggs and milk equal protein, and he needs the calories. After making the pudding I spooned it into several of those little clear plastic drink cups used at every party in the world for wine and cocktails. That’s a large serving for Lewy, but I thought ...pie….

After they had time to chill, Daddy woke up and started twisting up his covers into the cigar again. He gets so tense he starts the weight lifter high pitched groan he does. It’s weird, that squeal seems to go on continuously without him needing to take a breath. You’d swear he was about to pop.

There’s only so much of that I can watch before I give him the anxiety meds. Again he suckles the eye dropper. Gleefully taking his “medicine”. I have a hard time thinking of it as “Medicine”. It seems like “Drugs” to me. Just what I’ve criticized nursing homes for doing. “Drugging them up, so they won’t be any trouble.” You never quite understand what its like until you walk in their shoes. I cannot imagine having a dozen Lewy’s under my keep.

I would go absolutely mad.

After a few minutes, he calmed down enough that I thought I would approach him about eating.

“NO!” He was adamant, he was not going to eat anything or drink anything. Everything I gave him made him drunk. He had to be able to drive over to town to pick up some lumber and I was up to something. Hubbie and I are conspiring to steal his customers.

“I made you coconut pudding……?”

“NO!” “I saw you over there. I know what you are doing! I knnuummn uhunummm numnum. I ain’t unnumm happen mminnmm “ And this went on for another 10 minutes.

“OK, Daddy, OK…You don’t have to eat pie if you don’t want to.”

“Come Here! When unnm getting unmmn out ununm here?”

“Do you mean; when are you going to be able to get up?”

“No…..uuummm….Am I completely dead now?’

“No, you are not dead at all.”

“Well….uunum …when am I going?”

“I don’t know Daddy; no one knows that about anybody.”

Lewy was still all twitched up with the covers wadded up over his stomach. The rest of his body was exposed to the air. I had on jeans and a sweat shirt and I felt cold. “Are you cold?”

“NO!”

“Do you want some covers?”

“NO!”

“Do you want coconut pudding?”

“NO!”

I felt his skin. It was cold. I took the electric blanket and pulled it up over him and set it on Roast. As it warmed up Lewy settled down. I placed the hospital blanket we now have over his shoulders and tucked it around to seal up any air holes.

Within a couple of minutes Lewy was not asleep but off somewhere seeing things and people I can’t see.

I stood leaning over the bed rail watching his face for a few minutes. I think it’s safe to tip toe away now.

“Have a good time Lewy.”

Stages of LBD and Lewy Update

2008-03-21T11:11:00.000-05:00

Karen, (in the San Francisco Bay Area)
I found the “levels” of LBD text I mentioned. This was lifted from a forum conversation. There was no reference cited.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course ofaction.
6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7

Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost

This second finding was complete from beginning to end stages

Dementia can be divided into seven stages which are similar to those in Alzheimer’s disease. The seven stages of dementia are as follows:

I. No impairment of normal function: No sign of memory loss are visible to a medical professional nor does the patient experience any symptoms.

II. Very mild cognitive decline: People may experience some loss of memory such forgetting familiar words, names, or location of wristwatch, eyeglasses or any such objects of daily use. Family, friends or colleagues may observe these signs.

III. Mild cognitive decline: Early stage dementia can be diagnosed only in some individuals with the following symptoms:
The patient has trouble remembering words or names.
The patient loses the ability to remember names of individuals newly introduced to him or her.
Difference in performance can be easily noticeable in work environment, social environment by family, friends or colleagues.
Less retention from articles or stories read in a magazine or book.
The patient misplaces or loses valuable objects.
Decreased ability to plan or organize.

IV. Moderate cognitive decline: It is a mild or early stage dementia with the following clear cut deficiencies being observed:
The patient fails recollect recent incidents or current events.
The patient cannot perform some challenging mental arithmetic such as counting backwards from say 100 by 7s.
The patient is not able to plan or organize complex tasks such as arranging a party, planning a picnic etc.,
The patient would remain socially withdrawn and silent in challenging situations.

V. Moderately severe cognitive decline: It is a moderate or mid-stage AD with major gaps in memory and deficits in cognitive function. Assistance with daily activities may be required and following deficiencies are observed:
The patient fails to recall current address, telephone number and name of the college or school from which they graduated.
The patient is in a confused state of mind with regards to their current location, date, day of the week, season etc.,
The patient fails to perform even lesser challenging mental arithmetic such as counting backwards from 40 by 4s.
The patient requires help in choosing the appropriate clothing for a particular season or occasion.
Generally, the patient retains substantial knowledge and can tell his or her own name, names of their spouse or children.
The patients do not require any assistance for eating or using toilet.

VI. Severe cognitive decline: It is the next to the last stage and is also called moderately severe or mid-stage of dementia with memory difficulties continuing to worsen, personality changes emerging substantially and the patients requiring a considerable amount of help for carrying out their day-to-day activities. The following symptoms are observed in the patients:
The patient loses track of some of the most recent experiences, events and even their surroundings. The patient cannot recall personal history exactly, though she/he can recall her or his name perfectly. The patient can distinguish familiar faces from unfamiliar faces.
The patient requires help to dress appropriately, since they tend to create errors such as wearing shoes on the wrong feet etc.,
The patient experiences a disturbance in normal sleep waking cycle.
The patient would require the help for handling details of toileting such as flushing toilet, wiping and proper disposal of tissue paper.
There are increasing episodes of urinary or fecal incontinence.
Changes in behavior including suspicion and delusions such as suspecting the care giver as an impostor, hallucinations, repetitive behavior such as hand wringing etc.,
The patient tends to wander and become lost.

VII. Very severe cognitive decline: It is the ultimate stage and is called Severe or late-stage with the patient losing the ability to respond to the environment, unable to communicate orally and unable to control movements.
Very often patients in this stage lose the ability to communicate in a recognizable speech though they utter phrases occasionally.
Patients need assistance in eating and toileting with “general incontinence of urine” (9).
Patients gradually lose the ability to walk without support, to sit, to smile and hold their head up. Muscles become rigid and reflexes abnormal with swallowing becoming impaired (9).

Article by Kona Vishnu, MS
Medical Writer
OmniMedicalSearch.com

I thought since I found these I might pass them on. All this is probably old news to everyone but me and Karen in SF.

Daddy-Lewy is clearly in Stage 7. Now that I sit and read these, Lewy has been in Stage 6 for at least two years. The scariest part by this standard is; I’m in Stage 3!!

Daddy was hungry this morning and had a good meal and lots to drink. He was more or less with me, but in and out I’d say. At noon I feed him again and he was thirsty. By the end of the feeding he was twisting his sheet up into a tight knot again. He was straining so hard to wring it as tight as he could. He seemed afraid of something.

Now that I’ve decided the pain killers were killing his appetite, I didn’t want to give him any of that stuff, so I gave him a dose of the anti anxiety drug. After a few minutes he calmed down and began (I’m guessing here, to be honest) hallucinating. He was reaching up to the ceiling, first grabbing then pointing, and grabbing again. “They” were coming through the ceiling. A few minutes more and he was sleeping.

As the sun angle shifted into the windows beside Lewy, I could see that his eyes are now sunk back in his skull, and his once chubby face is now drawn upward like Popeye’s and his cheeks sink in making his skin look tight.
When he looks at me, mostly it is a puzzled expression I see. I think he is forgetting who I am more often. In fact maybe most of the time would be closer. I stood over him slighting leaning on his bed rail. I watched his eyes for some bit of contact. He finally after about a minute found my eyes, paused and said “Audrey?”

“No, it’s me Pauline.” Now I wonder if in his confusion he’s thinking he just called his wife by his latest girlfriends name….doubtful. I don’t think he could get that complex, but he sure did get that OH SHIT!! look.

For me, I’m pissed that he thinks I look 80.

3 comments:
3rd Wife said...
I wasn't going to make a comment about the different stages for fear that it would sound like I'm making light of the situation. But, since Pauline said it first....I feel like I'm somewhere between Stage 3 and Stage 4 already!

Pauline, it's supposed to be a beautiful day. Hopefully you can get outside for a bit and enjoy it!

kddove said...
stages 3 and 4 sound a lot like me, it seems like my whole life! especially the parts about not completing tasks...my doctor just put me on ADD medicine, now i can't STOP doing what i begin....

pearose said...
Hi Pauline! I know it's Hospice day for Lewy, so maybe you will get a chance to spend much of the day in this gorgeous weather. This weather will zap some stress away.

Maybe the sunshine will have a relaxing effect on Lewy, too!

Before The Fall

2008-03-20T11:06:00.000-05:00

Hubbie here. Today I want to tell you a bit about Pauline’s father; about Daddy; about before Lewy.

Pauline has told you before that we don’t have any children. The reasons are a long story for another day. That being the case we are probably not the best to judge Lewy’s “relative age”. Pauline has touched upon this as well. Many people before us have noted that humans in the latter stages of life take on the traits of humans in their early years. So by “relative age” we mean the childhood age that is equivalent to where Lewy is now.

A few years back I would tell everyone that having Pauline’s father living with us was like having a seventy-something year old teenager in the house. And it was true. When Daddy was driving he drove way too fast and, of course, got really defensive if you mentioned it. He’d sit in his room and play guitar. He slept late most mornings and stayed out late on many nights. Some nights he did not come home at all! I tried that once as a teenager and it didn’t go over too well. But even with a relative age of 18, Daddy was still Daddy. We couldn’t ground him and I sure as hell was not going to spank him, though I will admit that the idea strikes me as hysterical.

Pauline has told you (seems to be a theme here) her father is, was, an excellent dancer. Many years ago he and her mother took ballroom dancing lessons. When they retired to Florida; The Elderly People’s Republic, the community they chose to reside in held dances at least once a week. They had live bands and refreshments. Pauline and I attended a New Year’s Eve dance there one year so I can vouch for the fact that this bunch of old folks knew how to party. They all knew how do dance well but Pauline’s parents were often the stars of the show.

Sometime after Daddy came to live with us he began to develop a social network. His sister, Crazy Aunt Tom, lived near here and they would go to dances once or twice a week. There Daddy met a number of folks his age and many of them, like him, had lost their spouse. As we all know wives typically outlive their husbands (insert your favorite joke on the subject here) so most of the ones in that category were widows. And many of those widows loved to dance; and flirt. For Daddy it was a perfect storm, he loved to dance, he loved to flirt, and he was really good at both. Heck, he is still really good at the latter.

I’m here to tell you something………… Guys, learn to dance. If you do then when you get old you have it made. Daddy told me about the dances once. It seems they are a lot like every high school dance you ever attended; unless they came with a group, the girls sat with the girls and the boys sat with the boys. It seems Daddy was the king of the boys as far as the widows were concerned. He was reasonably well off; he was in good shape; he was (is) a natural flirt; and he could dance! He told me that he could make eye contact with a lady across the dance floor, then do that “come here” motion with his index finger and the lady would actually come gliding across the floor to dance with him. In no time at all he had girlfriends. You read it right…………girlfriends……..plural. It is really strange to have a 60 or 70 year old woman call and ask “Is Daddy there?”

You can hear the 16 year old girl that they used to be in their voice. It’s kind of creepy.

To be fair, Daddy never really “played the field”. There was always a primary lady. But there was always a back-up. And Lord did they pamper him. One lady would come over and cut his hair and trim his nails. I actually kept expecting one to call and ask,

“Can Lewy come out and play?”

“No, Lewy stayed out all night so he is in sitting in the corner.”

“Would you tell him I called?...........Please!”

“Sure honey. He’ll call you later.”

When Lewy and a lady latched on to each other as something special, was when it got really weird. They would be like two teenagers going steady. They would talk on the phone; and they talked like teenagers.
Daddy would get this school boy laugh and we could only imagine what she was saying. I know what we did as teenagers but transposing that to Daddy and his girlfriends was……………..weird………very weird.

One day when Pauline was away. Daddy, for some reason, decided to tell me about why he had not come home the night before. My brain shut down. All I remember is “then we got in the shower”. My brain plugged imaginary fingers in my ears and screamed “La la la la la la…………”.

So for those of you who are elderly, I hope you have sex every night so hot that it makes the neighborhood dogs howl - but please, don’t ask; and for God’s sake don’t tell! Those of us right behind you might be encouraged by your exploits but that won’t do us any good if some terribly disturbing image is burned into our brain.

I mean really, what are you, ...sixteen years old?

--------------------------------------------

Pauline here.

The hospice ladies came by today. Yvonne, is so nice. A lovely petite lady from South America. She washes Daddy and changes the bed. Daddy is clean. Very clean. Nurse Goodbody came by too. We changed his dressings, Daddy's vital signs were fine. I'm still withholding the pain meds, and he is eating and drinking better. Still not enough to do much more than sustain.

Lewy is hallucinating a lot. Last night he was worried about some piece of the ship as they navigated under the San Fransisco Bay Bridge. I told him I over heard the Skipper say everything was all right; Not to worry.

He was relieved a bit.

And OBTW, Lewy's last girlfriend called today. She's coming over to see him.

1 comments:
old friend said...
I'm glad Lewy's lady is coming...tell her to wear perfume!

good writing, Hubbie.

Last Kiss

2008-03-19T11:04:00.000-05:00

I didn’t post up yesterday on Lewy’s condition, because there just was not much to say. He remained asleep all day, through the Nurse’s Aide’s bath, and through the regular nurse and me changing his foot bandages with the suction pumps.

Near sundown he started getting agitated. We tried to feed him some, give him juice, but he would hardly take any of it. He became so agitated that I broke down and gave him the meds that I think are making him worse. It’s very selfish of me. I cannot handle the struggling and straining to get up and out of the bed.

This morning, I put the white beans I made last night in the blender and pulverized them into a paste. I poured up about an ounce of grapefruit juice and went over to wake up Daddy to feed him. An eye dropper is the best thing I’ve found to get something wet in his mouth. After a few droppers full of juice he was better able to open his mouth and attempt communication.

“Are you hungry?”

“uuunummnununum…no”

“You have to eat Daddy, you just have to eat.” I turned to get him some more grapefruit juice and he started coughing up mucus from his lungs. Now, anyone who knows me knows I can take blood, pee, and chili shit, but I cannot take body fluids that are slimy and stringy….I’m going to hurl just thinking about it…..deep breath…..calm…

As I approached daddy with the juice, he spat that enormous wad of slime at me, hitting my face and hair.

I was doubled over gagging and crying. “Why did you do that to me Daddy? Why?” I looked at him, I know with eyes full of rejection and disappointment. In my heart I don’t think he would do that to me on purpose but yet he is staring right at me. He started working up another glob.

I turned, went to the kitchen to wash off my face and hair, still sobbing. I looked back around at him, and he launched this loogee out over the bed rail into the middle of the living room floor. ….Oh geez, now I have that to clean up, I will puke, no way around it. I grabbed a washcloth and wet it…….Deep breath…..Deep breath….Ok, lets go….come on….get it together…..I finally got my feet to move. I approached his bed…his eyes were fixed on me.

As I turned the corner to go around his recliner to ward the bed, I looked to the floor to see where the loogey was. There were dozens of them. I can’t believe I managed to walk through them and not step in it!........Breathe Pauline….Breathe….run outside….quick…..I ran out onto the front porch. Lewy could see me through the window. I doubled over and had an uncontrollable gagging fit lasting well over a minute. Afterwards, I stood up, took several deep breaths and went back in. I was able to swab down the square yard of floor that was pelted with the phlegm.

Gagging I ran the washcloth to the washing machine and tossed it. Upon arriving back at Lewy’s bedside, he was wide eyed looking at me and trying to talk. I held a glass of water with a straw for him to drink. He took a couple of sips and spit it out.

“Daddy if you don’t drink something you will die. You have to drink.” I put the straw up to his mouth, he didn’t want to take it. “Daddy you have to drink something. This is good cold water; now come on….” He took a few sips and swallowed them. A few sips more and he had 8 ounces of water in his belly.

As I looked him over, I noticed the bed rails were covered with dried up phlegm. The bed under him was wet up to his shoulders where he had been spitting up and it was just running down his neck and shoulders to the bed…an then there was the puddle of goo.

LOOK AWAY! LOOK AWAY!!! The gag reflex was working overtime today. I got another clean cloth and shut my eyes and wiped around the shoulder. …….breathe……breathe…..

Since I’m here alone with him, and there will be no nurse by today, The best I could do at the moment was to get a disposable pee pad and wedge it under his head and shoulders. Every time I came into view, Daddy was staring at me.

“Pauline….?”

“Yes Daddy?”

“Is Momma gone?” “Yes Daddy, Mommas gone.” (It was exactly 11 years ago Sunday) Daddy burst into tears. I cried with him. I miss my momma so much, but I’m glad she is not seeing Daddy this way.

I put my hand on Daddy’s forehead and gently stroked his white hair back. He reached across himself to take my other hand that was on the bed rail. He squeezed my hand. I cried more, he cried more.

Daddy looked at me and asked “where is everybody?”

“There’s no one left but me and you Daddy. Momma’s gone. Brother is gone.” He cried out loud then.

“unmunm take….nunm …me…out…and…dump………..”

“No Daddy, I’m not going to take you out and dump you.” He has always talked about when the time comes to just go dump him in the river….

I turned to get him more water. He refused the drink. “Daddy, you have to drink. You HAVE to.”

“I don’t want to.” Plain as day…

“If we don’t get some fluids in you, it won’t take but a few days, now come on drink.” He turned his head. I stopped with the water and returned to his bed side.

Daddy looked me straight in the eyes, reached up to take my hand again, and said “I want to kiss you.” Now I’m crying again. My Dad never showed any affection towards us kids, especially me. I leaned over the rail and kissed him on the forehead, still sobbing.

When we remade eye contact he said “I want umnum kiss you.”

So I bent over and pecked the tip of his nose. He grabbed onto my shoulder to pull me down for a lip to lip kiss.

I know that in later stages of dementia, that Lewys may do inappropriate sexual things; and now that I clearly really do look like my mother, what he was wanting was a wet smooch.

I allowed our lips to touch, but recoiled as rapidly as a double barrel shotgun, with both barrels blazing. He seemed a bit shocked, looking at me puzzled. I supposed he wondered if he would ever get another chance for a last kiss with Momma.

2 comments:
pearose said...
Wow Pauline. Lewy's emotions are raging full force, it seems.

Sundowning is also a common theme for dementia patients. Based on the research I have found, I really think it goes back to our nomadic forefathers who had to set up camp by sundown. We've only had electricity for a short while in the human experience, so night time and darkness has been associated with uneasiness throughout our human history.

I met an Australian writer online, who was dying of cancer at the time, who had lived with the natives (Aboriginees) of Australia. Based on my question left on the Anthropology board on this very subject, he took it upon himself to do some research with the tribes he knew and asked about Sundowning amongst those who still live without electricity. Yes, they still experience a sense of unease at night with angst regarding unknown predators. Work (based on survival needs) have to be completed by sundown.

Agitation is a part of sundowning. Every day, right before Sundown, begin to play music to engage his senses and brain function. His brain is no longer functioning normally and again, the 'survival functions' are located in the brain stem - often one of the first areas of the brain in Alzheimer's Disease to become affected (not sure about LBD - does anyone know that?).

Because of the inability to rationalize the unease they are feeling, agitation and fear become overwhelming behaviors. Engaging the senses with music, a familiar taste or a familiar 'feel' (like Tweak) will have a calming influence on them. They are still connected with reality through those familiar sensing experiences (long term memories). Anything associated with short term memory will most likely have been damaged by the ravages associated with Dementia. So, keep the long term memory sensory experiences available in some form (and you will have to decide which is the most effective in your case), so there can be a connection with reality.

Smell is the last sense to be reduced by age, so find a smell that will engage his olfactory senses. The senses involving smell are postiively associated with memories (and long term memories are the ones that last the longest, obviously).

I am so sorry about what happened. He's in there, as you well know. The rest is the disease. Depression, as a comorbid factor with dementia, can do an overwhelming amount of damage as well. You are dealing with his depression, too. The hardest aspect of this for you is that you may want to do the fighting for him, since he may be giving up. It's a tough situation.

Take some time for yourself today. Hey - gorgeous weather out there (if you are a duck or turtle!), but this rain will bring us a green Spring.

There are many in support of you. Don't ever think that you are alone. We may not be there in person, but you have the respect of many and you probably have no clue why. Your strength and willingness to take on this huge responsibility is nothing short of extraordinary.

3rd Wife said...
Sundowning is also common in children. I experienced it with both of mine, but particularly with my oldest who was the colicky one. It is hard to deal with, no doubt. I remember the feelings of hopelessness because I knew that nothing I did was going to make a difference.

So...I say again, don't let guilt be a part of your feelings. Quite easy for me to say, I know. But you truly are going the extra 100 miles and doing all that you can do.

Your post made me cry today. Very touching and very raw.

New Fixture- a poem for Lewy

2008-03-18T11:01:00.000-05:00

We have a new fixture in the living room.
His name is Lewy.
We watch over him as he sleeps.
He moves has hands and contorts his face.
We wonder what he is seeing,
What he is hearing,
What he is feeling?
We don’t know.
He is in the room when people visit.
But not part of the conversation.
Often he is the topic of conversation
But not part of the conversation.
We glad that he is here
But
Should one be in the room and not be part of the conversation?
No
One should not.
Then again, no one gave you a choice did they Lewy?
No. I thought not.
So hang out as long as you want to Lewy.
We’ll be here.

3 comments:
Stella said...
Such bittersweet thoughtful words. Rest well, Mr Lewy, you have loved ones with you.

kddove said...
Lewy Can You Hear Me?
Can you feel me near you?
Lewy can you feel me?
Can I help to cheer you.
Lewy
Lewy
Lewy
Daddy...

Hubbie said... Oh kddove, that is too good. You and I must hang out more.

The Great Lava Flow

2008-03-17T10:59:00.000-05:00

Daddy slept all day. After yesterday I was grateful for this sleeping. I don’t know if I should wake him up to give him drugs or if he’s better off without all that crap in his system. I have to wake him to feed him. We were able to get most of a yogurt cup, ½ of and egg, and a little chocolate ice cream. All those together were maybe 6 oz. of food for the day. He’s taking in less fluid too. Sucking was successful, only once today. Other wise we are using an eye dropper or a Nyquil cup to give him fluids.

There was the required cleaning up after the diarrhea. I got his bottom cleaned, and the catheter tube cleaned, and had the clean sheets and pads rolled under the dirty sheets and pads. Almost done. I turned to get the cream to smear on his butt to prevent rash and help protect the sore developing in his lower spine area. As I turned back to Lewy, the great lava flow began, and as much as my initial reaction was to consider plugging the hole, my fear of the consequences of doing so, froze me in place to watch this massive oozing forth.

All over the clean and the dirty linens.

Hubbie continued to hold him on to Lewy's side while I went for more rags, more soapy water, and more linens.

Again I had completed the whole procedure, and he did it again.

The first time I cussed a bit about it. This time I cried about it. All there was to do was start over again. I went through a roll and a half of toilet paper, 6 pans of hot water, and 3 different wash cloths.

Thankfully this time he was done. We rolled him over to a more comfortable position and started the bed rolling device. It hums ever so often. The foot pump clicks and hums all the time.

Lewy cannot raise his head. When I look into his half open eyes there is no life to see. They are grey and cloudy now. After waking him to feed him, he became agitated again and started pulling off his clothes and the covers. I didn’t want to, but I gave him some of the meds to calm him down.

Hopefully he will sleep until morning.

3 comments:
pearose said...
I'm so sorry that you're having to deal with this situation. Maybe when his foot heals a little more, he'll feel better and the need for meds will be less. Hmmm...do you have any fleece blankets? Since they are washable, they may be worth a try as a cover. The material will keep him warm and won't fold around him like other materials, lightening the pressure he may feel on his skin. But then again, late stage dementia and the tossing of covers and clothes is fairly normal.

On the bright side, Spring is almost here. Gardening will help you release some of the tension buildup due to caregiving. And, you can open your windows for some fresh, flowery scent-filled breezes to air out your home.

Happy St. Patty's Day! Pinch Hubbie for me if he's not wearing anything green. Aw heck, pinch him anyway. :)

Stella said...
You are not hearing from me but I watch for and read every report about Mr Lewy. May you continue to have strength and good health to continue the care. I know you have the love to go on. Anger is good... be angry at the disease and what it is doing to you and Mr Lewy. perhaps it will help get the stress out. May Hubbie continue to fill your home with sassiness. You couldn't do this without that rascal.

oldfriend said...
Bless you my friend, there is light at the end of this walk.

When I Die, I May Not Go to Heaven

2008-03-16T10:57:00.000-05:00

Hubbie here.

Those of you who are very observant may have noticed the dog lying at Lewy’s feet in the picture. They are both watching something. We don’t know what. To be fair witness (something we may discuss at a future time) we don’t know for a fact that they are watching the same thing. But the dog is Tweak. She is Lewy’s buddy. I’m betting that they are watching the same thing.

Tweak arrived as a puppy three or four years after Daddy came to live with us. Pauline could tell you for sure, I’m lousy with dates and anything else that requires a memory. She is named after a Southpark character, a young man named Tweek whose parents run a coffee shop. He drinks lots of coffee and therefore twitches a lot. Pauline and I are either charmed or lucky because very often the names we choose for pets turn out to be very accurate and descriptive. Miss Kitty was bossy little cat who had to have her own way. Mr. Dillon was an old fart who tolerated no one except Miss Kitty, who would kick his ass. Festus is the old fart of a cat still limping around here. Festus never met a critter he didn’t like. Like Lewy, Festus sleeps 90% of the day, but when he is awake you need to be tending to him. He howls and if you don’t pay attention to him, if you don’t let him out to pee, then he will pee in the house. Just like Lewy. As for Tweak………….well………….she tweaks. You know that weird little spasm/jump you sometimes get when you are just about to fall asleep? Well. She does that…………..she tweaks. When she is lying in your lap and you are stroking clean soft fur it is cute; in bed at 2:00 AM it ain’t cute.

Tweak is part long haired dachshund and all mutt. Mutts are the best dogs; I’ll debate you on that question any day. The fun-fact-to-know-and-tell about dachshunds is that they watch things and they notice when something is different. It sounds weird but it appears to be true. Tweak knows both our cars and the truck; still, if we leave a car parked in the drive instead of in the garage where it should be, she goes nuts. (Hey, we’re American’s…..three people………three vehicles………it’s the law……..so what if Lewy shouldn’t drive……….he still has a license!!)………..Where was I?.........Oh yeah………….It seems that Tweak is smart enough to recognize the car when we arrive home but dumb enough to perceive the same car as a threat if we leave it in the driveway. This trait made for an interesting event.

We have had a lot of stormy/windy weather of late. During one of the storms about a month ago a large blue tarpaulin that had been on the carport blew out into the field. Combine my natural laziness with Pauline’s preoccupation of late and ……….well…………..we didn’t retrieve it. A few more windy days and the tarp blew into the woods.

I informed Pauline that the tarp had gone on vacation. Problem solved.
Turned out I was right, it was just a vacation. A few windy days later the tarp reappeared in the field. Then it blew into the flower bed in front of the house. It blew close enough for a small dog to see.………………….Tweak went nuts……………………and it wasn’t like greeting an old friend………….it was like “OMG!! WE ARE UNDER ATTACK!!”

Lewy was good news and bad news to Tweak. The good news was they became best buddies. The bonding did not happen though until Tweak got big enough to jump up in Lewy’s lap. As soon as she learned that little trick, Lewy became the “safe zone”. If she did something deserving of punishment and we caught her, she ran straight to Lewy and the safety of his lap. Then they would both give you that “Who me?” look.

“Yes. I see that you are angered at the pile of poo in the floor but as you can see that I am now under the protection of Lewy.”

“Ugh……mmm……..What?........I was sleeping!............What’s the matter?............Dog?............This dog?...........She is just here keeping me warm……….What?...................Well it could have been that dog that lives in the elevator.”

As is most always the case in life the equation had to be balanced.

While a twenty-five pound dog leaping from your lap to challenge a marauding tarpaulin might be of no consequence to a young highly toned person like yourself, when your skin is in its late seventies the claws tend to be an issue. Tweak was leaving significant holes in Lewy’s arms even as she attempted to protect him from all evils. And so it was that we took Tweak to Doc Coles to have her claws removed. There are pros and cons to this procedure and we shall not debate them here. A wonderful friend, who, because she is a wonderful friend, shall remain nameless, spent a drunken hour one night berating Pauline about the declawfication. Yes, if Tweak was a human it would be cruel…………but she is not………she is better. Anyway, without her claws, she did not hurt her friend and protector Lewy as she strove to protect him. She might leap out at the Giant Blue Tarp Monster but, with only fur on her feet, Lewy’s arms remained undamaged. That way he could keep her in his lap. That way they could stay buddies. Put Lewy in his recliner, a blanket on top of him, flip the lever to raise his feet and lean back. Do all that and Tweak will be right there. She’d jump up in his lap and they would both snooze away. Some times he’d pet her. Sometimes she’d lick his hand. Sometimes she kept watch while he slept. Sometimes he watched TV while she slept. Mostly they just cuddled and slept.

So I watched closely the other day when Lewy made it home from the hospital. We put the dogs on the back porch so that they would not be underfoot while we were getting Lewy settled. The ambulance drivers brought Lewy in. The new hospital bed was not here yet so we had to put Lewy in his recliner. Pauline has told you the story. The doctors had Lewy pretty much “downed out” (“drugged up” if you prefer) for the trip home. We thank them for that kindness. After we got Lewy cleaned and settled, Pauline went to walk among her flowers. I sat down to see what Alton Brown was going to teach me.

Tweak came in and looked up at Lewy in his chair. She seemed to know that something was different. She didn’t run and jump in his lap. Lewy reached out his hand and Tweak walked over and put her head in his hand. His arm was stiff and awkward but he managed to pat her on the head. She licked his hand and then curled up at his feet, sharing the blanket that spread over the floor beneath his chair.

If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers

2 comments:

3rd Wife said...
If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers

Me too.

oldfriend said...
oh, I'm believing there are dogs in heaven, Hubbie,and I don't even like dogs...it's the cats I'll be glad are there!

Lewy, Hang On

2008-03-15T10:55:00.000-05:00

Saturday was a difficult day for Lewy. He was hallucinating when I got up and went to check on him first thing in the morning, and the hallucinations continued throughout the morning. Normally Lewy sleeps but today he was straining to hold onto the bed rails. He kept saying he had to hold onto them or they would fall off.

Hubbie and I rolled him onto his back thinking maybe that would stop the vise grip on the rails. Indeed it did for a while. Instead of the rails Lewy started pulling off his bed gown and the covers, exposing his naked body.

I kept trying to cover him back up, and he would keep pulling them off. Hubbie took the gown and wadded up in Lewy’s hands thinking that would give him something to grab onto – hopefully then the covers would stay on.

This worked for a bout 5 minutes then Lewy was twisting the gown into the covers and rolling them up like a giant cigar. He kept complaining of pain, but we couldn’t figure out where, so I gave him the pain medication, later some anti –anxiety pill, then an anti spasm drug, nothing was working to settle him down.

I don’t know why I thought perhaps he is just cold and is not able to figure it out, so I put the electric blanket on him and turned it on high. At first he was trying to throw it off but in a few minutes settled down to just clinching his fists on the railings. Enough time had elapsed that I could give him some more meds to calm him down. After a while, this round of drugs settled him into a tortured sleep of straining to hang on to something.

As for me, I had to remove and replace the wound sponge and pump device on his left foot. It certainly does not look nice and neat the way the nurses do it, but the suction is working and the alarm finally quit going off. It only took about an hour to get myself together to jump in there and find the stuff and force myself to do it. It wasn’t so bad…

But I gotta say, the diarrhea is really tough. First of all it takes both of us to roll him about to clean him. I’m just learning this layering of pads and sheet rolling techniques. And I have to go through a mental checklist of things required to do the job. You have to have everything ready to go. So for each bowel movement, its not just Daddy to clean, but 2 pee pads, a sheet, probably a blanket and definitely his gown. Two extra loads of the nastiest laundry you can imagine everyday. Actually four loads, because I have to run them through twice.

Lewy has begun to refuse food. He thinks we are trying to kill him. I can deal with Lewy thinking I’m doing mean things behind his back, but it hurts when you see and hear it come out of your Dad’s mouth; especially right after you’ve cleaned his butt.

1 comments:

pearose said...
Caregiving for dementia patients is the toughest job in the world.

Typically, dementia patients do remove their clothes or anything that is touching their skin. As you both know, aging skin becomes thin which decreases the ability to regulate heat/cold. It also becomes more sensitive to pressure created by the weight of clothes, blankets or any other material. The lack of ability to rationalize the weighted material, with the damage being done to the brain stem (the location of basic fear in the brain) and other brain areas adds to their need to 'get it off.' Apparently, Tweak's presence has not become a bother on his skin ... yet.

Research CLEARLY shows that the attention given by a dog or cat to an ill person, especially the elderly, adds tremendous value to their lives. The ability to love and be loved unconditionally is as good as it gets. I'm so glad Tweak and Lewy are buddies. I'd rather have my own fingernails dug out than do that to my own dogs, but you make a great case - Lewy and Tweak need each other and the claws would create a major wound problem.

Besides, mine are way too big to jump in my lap, unless I'm sleeping. Then, body slamming me to get a really close sleeping position seems acceptable - to them only. My sore ribs....

Bring it On

2008-03-15T10:53:00.000-05:00

There are just not enough good words to say about the hospice people. Everybody, down to the truck drivers are the nicest people. Perhaps they take some joy in knowing how much they are appreciated….at least I hope they know…

Lewy is sleeping.

It’s amazing how a trauma like surgery propels Lewys to the next stage. A week ago he was with us a little bit here and there. Now; Not so much…In this week and a half, he can no longer walk (for whatever reason); he has to be spoon fed instead of feeding himself; he went from constipated to incontinent; from peeing in his cup, to being catheterized; from toddling about to bed ridden.

If it were not for the prospect that Lewy’s legs would have had to have been amputated, there is no way, and with 20/20 hindsight I would put Lewy under sedation. I don’t know if it was the drugs, the trauma of surgery, the strange environment of the hospital, or all three, but keep your Lewys out of the hospital if you can.

When Daddy went in the hospital last spring, he came out much worse than when he went in. It was the same, less walking, less lucid talking, more sleeping, less eating.

Lewys; I believe don’t take to institutional care.

Hubbie here. Today’s lesson will be about government in action.

First off, I am not the political wing of this family. Pauline is politically active but, being an intelligent human, the actions of those that run the system baffle, frustrate and disappoint her. (Pauline, if you feel I have misstated please insert your words here………………………….). OK, so on with my oratory (yeah I know, but I read aloud as I type).

I always vote. It preserves my right to bitch about the government. But I don’t want to run for office. I don’t want to be president. I want to be king. But don’t worry, I only want the position for a day or two. Well, to be truthful, I want to be king for a day or two twice.

If I were King of the Forest:
1. Every political contribution would have to be matched by a social contribution. Equal money to a certified charity or similar organization to make the world a better place. Any candidate mentioning how much their campaign has raised for charity will be fined $10 million dollars and be forced to tell a joke of his own making on national television. On the second offense you must have sex with either Ronald or Nancy Regan. Yes I know he’s dead. You can have your choice.

2. Every LBO and hostile take over and company merger would be subject to impact fees. To help the displaced (i.e. Fired employees) and to limit the amount of money one can make from buying a company just to suck the juice out. I’ll call it the Vampire Elimination Act.

3. There would be a “Where in the World is Your Congressman or Senator?” website. They would be on TV 24/7. Hey, it’s a 24/7 job. We want to know where you are and there are a lot of us.

4. Any woman found running a “puppy mill” or similar operation, will be forced to breed children for adoption for the rest of her life. When she is no longer able to bear children she will join the men found guilty of this offense in cleaning the cages of animals waiting for adoption. And I want to see those cages REALLY clean. Housing would be provided in the “Mill Runners Kennel”. Free dry food and cold showers. (I really hate these people)

5. Frequent Fliers, like myself, would have secret airports. We would have no rules on the plane. Leave your tray up or down; we don’t care. I might allow tourists on the plane provided they had completed “how to fly training”. They must learn proper bag size, how airplane seats are numbered, how to get your ass out of the aisle and into the seat and how to stand up-grab your bag-and walk off a plane in 30 seconds. Children less than six years old will be allowed only on planes having a “nursery room” like churches have. If your child over six can’t behave on a plane for two hours then you are banished forever from Frequent Flier Flights.

6. My sixth rule is the one that requires a second term. I decree that the country set a course to develop a “stupid bomb”, one that would cause stupid people to drop dead; no pain, no warning, just drop dead. I know it sounds harsh and I have friends that will die if such a bomb is dropped but it must be done. A few years ago I thought only 15% or so if the people in the world were stupid. Today that number must be well over 25%. If by the time I am elected to a second term as King of the Forest that percentage still stands at 25% then I drop the bomb. Sorry but it must be done. Of course if you disagree you don’t have to vote for me.

In the words of Bill Cosby, “I told you that story to tell you this one”.

Pauline has touched a bit on how nice and friendly and efficient and helpful and kind and well organized and caring and full of knowledge and willing to share that knowledge the people are that we have met from “Alive Hospice”. They are amazing. They all know what they are doing. They are all willing to teach you what they know so that you can do it if they are not here. They are on duty 24/7 to help you in case you forgot what they taught you. They are angels.

For example….

I took off early today so I could watch some of the SEC Tournament games, the Tennessee game. And it was a good thing; they probably would not have won without my calming influence. Shortly after I arrived, the hospice nurse arrived. She checked and cleaned both of Lewy’s heels. She prepared and set a new dressing. She checked the sore on Lewy’s butt. She showed us how to get a pad under Lewy as he lay in bed and then how to use that pad to manipulate Lewy in his bed. She checked and adjusted his catheter. She explained to how best lock it in place and how to route the tubing. She knew what she was doing and she did it very well then she went a bit beyond to help out someone that could use the help.

She works for Alive Hospice.

She is typical of the people we have encountered in this organization.

Alive Hospice is funded by Medicare.

If this is government funded socialized medicine then please;…… bring it on.

1 comments:
pearose said...
Drugs administered in the hospital for pain (like morphine) have a HUGE impact on the elderly and increase disorientation. I hope Lewy becomes more lucid soon. And, I'm glad to know that Hospice is helping you out. It is such a wonderful organization.

Hubbie -
As far as I'm concerned, you are a King and the sociologist in me loves the idea of the social contributions. :) And the treatment of puppy mill creeps that abuse the animals. :)) And the Vampire Elimination Act (despite the fact that some companies don't need to be merged in a hostile takeover to suck the blood out of their own company. :)))

Not liking the idea of trying to find Bob Corker. His voice still gives me nightmares from the midterm election. I don't want to find him as much as he doesn't want to be found - we get along better that way.

Now Hubbie, we both know you're too pretty to fly - that's why you have problems on planes. The other passengers are jealous of you.

Thanks for being there for Tennessee. I have no doubt that your influence helped.

Candy Apple Red

2008-03-14T10:50:00.000-05:00

Lewy slept well through the night and into the morning. I finally woke him up for some hot cereal and his pills. No sooner had I finished putting up the dirty dishes, a very nice South American lady came to bathe Daddy.

She was so very kind and gentle. She shaved his face, cleaned out his ears, and cleaned all those really gross places that had blood goo from the catheter and a tiny bit of poo from his rear. Bless her. She explained the bed changing technique so well I think I could actually do it now….maybe…

He looks so good shaved. I had been content to take him with me to the beauty shop for a trim, but not a full blown shave…..I think he will miss going to the salon with me. He got all kinds of hugs from the ladies there.

The hospice Chaplain came by. A very nice young lady. I think that is it for today’s visitors. But talking to the Chaplain reminded me of some of the fun stories to tell about my Dad.

----- ----- -----
When I was in my early/pre teens Daddy sold Fords. Back then Fords were really cool. They had big engines and huge white wall tires. And they had Mustangs.

Daddy, always loving to make a deal, took me out riding one afternoon to a very small town up on the Plateau. We really (as far as I knew) did not have any specific plans. Being a Ford salesman, he decided to drive by the local Ford Dealership.

There in the middle of the showroom was the most beautiful car I had ever seen. It was a “Candy Apple Red” 1964 ½ Mustang with a black rag top. I was in love. Now you might think it strange that a car salesman would buy a car from a strange dealership, but not with my Dad. If he could talk the guy down to almost no profit, he would buy it. And so he did.

“We” traded in the old Oldsmobile that my Mother drove all the time for the Mustang. It was soooo cool. What a great car. I was in heaven. Daddy put the top down and we drove the 100+ miles back home.

But rather than go straight home, Daddy drove over by the elementary school where I went and stopped the car in the middle of the road. He got out walked around the car opened my door and said “Get out, your going to drive us home.”

WHAT!!!! I GET TO DRIVE!!! OMG!!! THIS IS SO COOL…..Oh please dear God, let one of my friends see me….

Sure enough, I went around to the driver’s seat, and Daddy rode shotgun. He asked if I had been paying attention to how he drove... YES YES YES…I didn’t dare say no…

The truth was; I had been paying attention. Careful attention. He pointed out the brake and the gas and had me press on both…"No with your right foot…always the right foot." Then the clutch. “Always use the left foot on the clutch”…He then explained how you press on the clutch and lift off the gas, then press on the gas as you lift off the clutch. We sat there in the road for 10-15 minutes, with him telling what all the “things” were.... Not a single car came by…

Then he said. “Let’s go home.”

I turned on the ignition and popped the clutch causing the car to leap forward and then I killed it. “That was very good. Now try it again, easy on the clutch.” We gave it three tries before I got the car in gear and rolling. “Push down on the clutch easy and lift off the gas easy” …… He put his hand over mine and helped me shift the gears…We drove around on a flat area for a bit then he had me drive to the edge of the hill.

“Stop the car”. Ahh No..., I figured it was all over. But it was great fun, none of the kids would believe it when I told them…Geez, I might be cool for 2 minutes…

I started to get out. “No No” I’m just going to show you how to navigate a hill.

YEAH!! I’m still driving…Please someone come by and see me, please…I restarted the car and followed all the directions, but on the hill I was having clutch issues. I just could not get the thing to do right. All I managed was to go a few feet and stop, kill the engine, try again…over and over.

Daddy was truly brave now that I think about it. Or maybe he was prepared with the hand brake…but we were headed straight for a steep drop off. He let me get so close to it, I was afraid to try again.

He got out - came around and got in the drivers seat. He left me standing in the road. He put it in gear, backed up, got it straightened out for me, then turned it off and got out.

“Come on drive us home.”

I got in, started the car and with a few herky jerky moves got the car going and I drove the 3 miles to our house. I put on the blinker and turned into the driveway. Momma was out digging in her flowers. She stood up - put her hand up over her eyes to look at this strange car and who might be in it.

She dropped her hand shovel and came running to the carport as I pulled in and stopped. I killed the engine accidentally, but it wasn’t too bad…I don’t think she noticed.

Even better, my older brother saw it too. He started in on Daddy immediately to let him drive, but Daddy wouldn’t do it.

That was my big day, and he wasn’t going to spoil it for me by letting my brother take the car. YES! YES! YES!

That night at dinner he told the story of how he whittled the guy down to only $25 dollars off his cost, and how nice a drive it was, and how he taught me to drive that day.

I was 10 years old. Oddly enough it was a good thing he did teach me to drive long before I was old enough, because in later years, still before I was old enough to drive, I ended up having to.

Today, they would probably put Daddy in jail for letting me drive, but it was one of my best kid hood days ever.

Thank you Daddy….I’ve always loved telling everybody about how I learned to drive in a Candy Apple Red 1964 ½ Mustang with a black rag top.

2 comments:
Stella said...
This is good, Pauline, this is your daddy. When others look our way, they see Freddie, an old man who is talking with no sense at all. When I look towards him, I see my soldier boy. I see those brown eyes with the twinkle and the smile which said, "I will always love you". Apple red Mustang? You can't beat that, no matter how you try.

oldfriend said...
Stella's right, Pauline, it's in those memories of Candy Red Mustangs where you will find your Daddy. And those hills...I could never forget them!

Hospice

2008-03-13T10:47:00.002-05:00

The morning started by greeting Lewy in his recliner. It was time for the morning pills. As I approached Daddy with the pills and milk, I again had a rush of unpleasantness up my nose. Oh no, not again! I had hoped for longer durations between the dumps. Lewy had only gone once the whole time he was in the hospital. He’s been here less than 18 hours and this is the second round.

Since we are talking about such nice things…Lewy has been constipated for a long time. Now it seems he has passed over into the final phase of stage 6 LBD, fecal incontinence.

That can only mean that stage 7 is near.

Hubbie and I rolled Lewy around and finally got him cleaned up. Then Hubbie was off to work.

The UPS dude came with the vacuum pumps, then the FedEx dude came with the box of drugs…I had no idea it was drugs. It came in an envelope…I didn’t even have to sign for them…

The hospice nurse called to schedule her arrival. This was great, because it allowed me to call my nephew and his wife (a nurse) to come over to help move Daddy from the chair to the bed. With that task completed, the nurse began to look Daddy over. We decided it might be best if they inserted a catheter…which they all call a Foley Unit…(What’s wrong with catheter? Is that old speak?) The nurse had a bit of a time with the insertion. The prostate was not cooperating.

So here I stand at the foot of my Dad’s bed, watching Nurse Goodbody hold his penis straight up and start shoving a tube down in it. All this exposure is really weird. I guess I’ll get over it, but it is ever so creepy to see that much of your father.

The wound nurse came and instructed Nurse Goodbody on the proper wound care procedures. They were both very nice and seemed to be really interested in taking care of Daddy. We discussed the stages of LBD a bit. They seemed to have a better handle on it than the hospital staff did, but didn’t act like they had seen it up close and personal yet. I guess we will all learn together…

About an hour after the nurses left, the social worker/ counselor arrived; A nice grey haired lady with a lot of spunk. We chatted for at least a couple of hours, maybe three. She explained how the hospice care would work, and how it is all covered by Medicare and it would cost nothing. This time, it was true, we no longer have to rent the wheelchair or the bed. And believe me, this is a much better bed…All his drugs are free, delivered to the house.

I can see why people are against a government run service…it works perfectly…who needs that?

The counselor assured me that once Daddy was in hospice care, he would not be removed. Again that bad government paid for service is set up to take care of a few who maybe don’t need it, rather than cut out someone who does, just to have tight rules….Yeah, this is horrible.

I now know that my dad will be taken care of. And I know that if I have to get away, they can take him for a week every 3 months to give me a break. This is all so perfectly wonderfully nice. What a relief.

There’s that sword again. The service and benefits are great but the beginning of the end is here.

2 comments:

kddove said...
i think foley unit sounds much less scary than catheter. especially if you've never heard the term.

oldfriend said...
I'm so glad that more of the routine and technical care will be delivered by professionals who are experienced and that YOU will get to be Daddys' girl...again.

DISCHARGED!!!

2008-03-12T10:45:00.001-05:00

I was thrilled this morning when Richard, Daddy’s wonderful duty nurse came to confirm we were being discharged. YEAH!!!! I get to go home! Daddy gets to go home!!!

Richard said the ambulance would arrive about 2PM. That would give me time to run grab lunch, get to the pharmacy, race through the grocery store, and get home to greet Daddy upon his arrival.

Hubbie had left work earlier to head home to begin the process of moving the couch out of the living room into the dining room to make room for the new bed the Hospice folks were sending over.

With errands completed I got home, got the groceries put up, and with Hubbie’s help got Lila and Tweak bathed. We got the Living Room rug rolled up and stored, the couch moved and the floor and baseboards cleaned of months of dust.

The ambulance arrived right on schedule. Unfortunately the new bed had not yet arrived. The EMTs lifted Daddy out and rolled him in. The four of us lifted the sheet corners and transferred Daddy to the recliner.

Suddenly there was the unmistakable smell of shit. I pulled up the sheet and found the cow pie sized shit slick. It looked like thick chili - so thick it would just stick to him when we rolled him over. It was everywhere. I started trying to clean him up with paper towels but the garbage can was getting full and the roll was running out. I switched to a washcloth and soapy water. Then another washcloth…It was so much that I gave up trying to rinse the cloth out.

Piece by piece we got two layers of pee pads out from under him and rushed to the washer, the sheet under him, a blanket they had rolled up and put under his thighs, and his gown all covered with shit were rushed to the washer. That’s a load that will get run through twice with extra rinses each time….and LOTS of bleach.

Still there was Daddy to clean. Hubbie was rolling him over and I’m washing all those parts I never wanted to see much less touch. We managed to get clean pads under him and a fresh diaper….I wonder why the hospital never used diapers? It could not be worse than the mess I just cleaned up. Oh the smell…I opened the front door to air out the house. It was almost 50 degrees… not too bad…

We got daddy a shirt on and a couple of blankets. He was immediately asleep.

At this point, I must back up. Before Daddy was discharged the case worker for the hospice came to see me in Daddy’s room. After talking to me about where Daddy is in his decline, she felt he probably is not ready for hospice care, but she would set it up anyway, and we then could get a good in home evaluation. Talk about a double edged sword….If he is in hospice care, everything is taken care of, there are nurses about all the time, social workers, everything I need 24/7. But then it also means the end of the line.

I don’t think he is in his last throes. When we sat down for dinner Daddy woke up. I fixed him a bowl with a thoroughly mashed loaded baked potato and some veggies. At first Lewy was in full swing, so I started hand feeding him. After a few bites he took the bowl and the fork and started eating on his own. That would be one of the things that makes him not really hospice material. He ate almost the entire bowl of food, some chocolate squares out of a Hershey’s bar, and drank a full 8 oz. of milk. And of course a fist full of pills.

Daddy is sleeping now, as is Hubbie. I’m back at my mid night computer perch and all is well with the world.

3 comments:

Stella said...
Bless your heart.

Goodnight.

hassana said...
Very glad to hear that Lewy's back home and that he's eating well... good sign. God bless you all

Rose said...
Good news! I'm very happy to hear that your father is home and enjoying his meals. My best wishes for good time together (and patience and strength for the more challenging moments)

Monday Hospital Update

2008-03-10T23:45:00.001-05:00

When I arrived this morning about 8 AM, I’ was feeling guilty for arriving so late and leaving at 5PM yesterday. His catheter is full of blood. Apparently he has been pulling in the it. I had to wrestle with him a bit to keep him from ripping out his IVs.

They are going to take him down to radiology soon to take a look at his bladder. I had thought they were looking at a thinning of the bladder wall, but the infection specialist told me they were looking at a thickening of the bladder wall.

A thickening meaning a growth of some sort.

The infection specialist is still trying to determine exactly what antibiotics to give Daddy. I’m getting the distinct feeling that this is something really nasty going on in his feet. Infection specialists,…. and the comment from the other doctor of “you don’t want to take this home.” …. I’m wondering what on earth it could be because he had the infection before the surgery. Could it be something from home?

Oddly enough, our regular GP hasn’t said much. I think he just doesn’t want to be the bearer of bad news. He was in the room when the infection specialist appeared. He excused himself pretty much immediately.

The infection doctor, after examining Daddy, motioned to see me out in the hall.

He was very nice, understood that I was a bit in the dark about all of this. Of all the medical staff, he is the first one that when I said LBD, knew what I meant, and knew immediately where Daddy is in the stages.

He said “You know your father is in entering into the late stages, don’t you?” Yes, I know. I told him that of the information I had found that he was entering the final sub stage of stage 6. He nodded. He then asked if there were other family members that were responsible for end of life decisions.

“No, just me.”

“Do you know what your father’s wishes are concerning being tube fed?”

“He would not want to be kept alive unnaturally.”

Then the specialist said that we most likely need to be getting a Hospice involved.

The dreaded “hospice” word…I could not help tearing up. The specialist was so nice. A gentle hug about the shoulders. He then said he would meet with the other doctors and discuss the plans for future treatment or lack thereof, and tell our GP that I’m wanting a direct concversation about what’s next.

I don’t want Daddy to see me crying. It seems even when you know what the news is before hand, it’s still a surprise when it actually arrives.

8 comments:
3rd Wife said...
Pauline, I don't know what to say. But you know where to find me if you need to get out, get away, reminisce, or raise a glass (or two!).

And Please(!), of all things you're feeling, don't let guilt be one of them!

kddove said...
Remember.. for the most part, Daddy has already gone. And try to think how you'd feel if in his place. If he has said no unnaturally keeping him going, he said that when he still understood it, and meant it.
And Ditto on what 3rd wife said...

Stella said...
You have carried this valiantly for years. It may be time to lean on other's shoulders. No second guesses about what you could have done differently. You have cared for him with love, as you will continue to do. I'm so thankful for Hubbie.

hassana said...
My prayers are with all of you Pauline. Believe me, the kind of care and attention that you've been giving to Lewy for the past so many yrs requires unusual strengths and patience .I'm sure Lewy is very proud of you Pauline and I'm also sure that he feels every bit of your unconditional love, keep it flowing, this is what counts now.. Hang in there, stay strong!!

pearose said...
Pauline - I am so sorry to hear the news. You have the support of your friends and remaining family. I'm here in any way you need me and will be glad to help out if needed. You are in my thoughts and you have my deepest empathy about upcoming decision-making moments. Give yourself and Lewy a small hug for me. You are all loved by many - know that we're here.

pearose said...
Pauline and Hubbie - how ya doing? I don't have your cell number and I also don't want to intrude, but was wondering how everything is going. You are in my thoughts and will be for days to come.

oldfriend said...
(((((hugs))))

Bailey said...
Hello -
I read your blog about your father. I too had to enlist the help of hospice for my father and myself.

I wanted to let you know I am a documentary maker and hospice volunteer in Atlanta, Georgia.

I've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.

It's called 203 Days.
You can view it in its entirety at the following University of Connecticut website along with a study guide.

It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.

http://fitsweb.uchc.edu/Days/days.html

203 Days recently won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).

If you'd like more information please go to my website
http://bbarash.com/bb_203days.htm

I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.

Bailey Barash

The Secret Life of Ethel Merman

2008-03-09T23:42:00.000-05:00

Hubbie here.

You know from Pauline’s post yesterday that we woke this morning to see four or five inches of snow on the ground. Hardly earth shattering but it is the largest snow we have had in five years. (That history nugget is from the weather dude. Like a friend of mine, “I have the memory of a crack baby”.) The roads did clear about noon so Pauline was able to get to the hospital to sit with Lewy. I’m glad because he doesn’t handle things well when he is surrounded by strangers. On the other hand, in this case the strangers are sweet, caring nurses so I’m sure the dirty ol’ man in him is eating it up.

Lewy’s room is a typical hospital room. It’s a fairly new facility and the rooms are large. The window has a wonderful view of the driveway and several very nice pieces of mechanical equipment on the roof but, to say the least, Lewy is not roaming around looking out the window.

There are two things about the room that have attracted his interest. First it appears that the room was originally a pediatric room because the large border around the top of the wall is populated by bunny rabbits, teddy bears, a toy sailboat and a snare drum with a smiling face. Lewy finds these creatures interesting but can’t seem to figure out why they are there and what it is that they want with him. Perhaps because they are toys Lewy does not perceive then as threatening. Thank god he didn’t grow up with movies like Chucky and Small Soldiers.

The second feature that attacked Lewy's interest is, no surprise, the television. Like many hospitals this one seems to have purchased the bizarro package from the cable company. It has one sports channel, the local channels and then a collection of game show and educational channels. The most interesting, meaning weirdest, is an “arts” channel. It rotates bits of ballet, opera, symphony pieces, etc. You know………. boring stuff. It might be good live but on a small TV screen? ZZzzzzz. Then again the drugs in a major hospital are pretty good. Perhaps with a morphine drip this is academy award winning stuff. It certainly made it more interesting for Lewy. One segment had two very proper ladies sitting at a table. The subject under discussion was unknown to me as the sound was off. Lewy knew the subject. It was the position of his feet. Despite his protests that the morphine drip was having no effect it seems that the lady on the right was pressing on his foot and I had to adjust his foot to relieve the pressure. The lady on the left just held his foot. That did not seem to bother him. It is interesting to note that it is his left foot that had the lesser damage.

The most interesting thing about the bizzaro channel was that some of the pieces had set decoration that seemed to be taken from movies directed by Ed Wood’s grandfather. (Remember Plan 9 From Outer Space where you could clearly see the string holding up the Flying Pie Plate..…I mean Saucer?) One piece from the 1940’s was a depiction of the robot butler of the future. A big boxy robot like your kids would build from the boxes left over after Christmas. I imagined it waving its arms shouting “Danger Will Robinson!!” but given the age of the film and the tone of the channel the robot would have been more likely to quietly state, “Excuse me Master Robinson but there appears to be a matter that may need the attention of your father.” The strangest piece seemed to be set in a judge’s chamber from the movie Metropolis. The judge’s podium was about eighty feet tall. Stage right was a man one could assume was the prosecutor. Stage left stood a petite young woman holding her hanky and singing an aria. I can’t tell you what she pled as the sound was off but it appeared she felt she was not guilty. As the scene wound to a close titles appeared stating that the singer was Ethel Merman. Ethel Merman!?!?! The Ethel Merman I remember could have eaten this child for lunch and still have had room for desert.

Ugggghhhh…Yuck!!....OMG!!!…For someone that reads a lot I am a lousy speller so I just Googled “Ethel Mermin” to make sure I spelled it right. Yes, I know, I had it spelled wrong but an odd thing came up in the search. You know how Google shows a portion of the verbiage of the webpage for each page found for your search? Well the third item down in my search was titled Photo Album and had this phrase “ethel merman the sugar coated love sausage”. OMG!! Eeeewwww!!! Ethel Merman a love sausage? A sugar coated love sausage?!? But I swear it’s true. Try it. If you dare go to the website please let me know what sort of strange information it contains. I’m curious but I just finished supper and don’t want to lose it. Maybe Ethel was a different kind of girl before she put on all that weight and learned the words to God Bless America. Maybe she wasn’t even a girl. God I hope I don’t dream about this.

2 comments:

3rd Wife said...
Hubbie, you crack me up sometimes!

I'm glad Lewy made it thru surgery ok. Pauline should try to rest while she has a chance.

kddove said...
If this wasn't so sad, and horrible about how the medical profession seems to have gone to hell... you guys could give up your day jobs and write sitcoms! But it seems like I once read that there would be no comedy without something tragic to make fun of... maybe it's true?

Saturday Hospital Update

2008-03-09T23:40:00.000-05:00

When I arrived at the hospital today (Saturday), Lewy was more or less flat on his back, with his food tray perched over him. I checked the food. Not eaten. I can’t believe they would bring a food tray in here and not help him eat. How many times do you have to tell them he has dementia and these things are very difficult for him?

I took the knife and cut the chicken breast up into bite size pieces. Lewy hasn’t had the ability to use a knife in months. I just don’t get these people. I wonder if they would ever bother to feed him, or just come remove the tray.

After feeding him, I checked his bed. The pee pad was wet; but almost dried out around the perimeter. So how long had Daddy been lying in his pee? This, to me is inexcusable. I walked down to the nurse’s station and asked “How long does my Dad have to lie in his own pee before someone comes to change his bed?”

Oh yes, you get all of the “Sorrys” yeah right. They are all standing around the nurse’s station wasting time telling jokes. I can tell how sorry they were.

The charge nurse came around a few minutes later. “I’m so sorry” You know how it is you can’t depend on anyone to do their job”.

I’m thinking, Yes, you for one. I hate people who blame everything on the people under them. It was her job to make sure everyone else did what they were supposed to do. Over several different occasions she apologized and blamed everyone else. She spent enough time whining that she could have done the things required, but no…

Some minutes later, a very nice male nurse appeared to put a catheter in Daddy. He took the effort to bend over make eye contact, talk to him….”Lewy, I’m going to hook you up with a catheter, OK?” Nothing from Daddy. The nurse smiled at Daddy, leaned over again and repeated the question. Daddy mumbled something that I took as an “OK” and made an affirmative nod to the nurse.

The nurse then lifted the bed sheet from the foot end to gain access to Daddy’s penis. AS he got the sheet up far enough to see where he was going, he started laughing. Curious, I thought.

“Mr. Lewy, you gotta let go. I need to get in there to hook you up.” Daddy didn’t let go. Now we are both laughing.

“Daddy, you need to let go of your goober.” Now the nurse is laughing out loud. “Daddy let go.”

Daddy mumbled just enough to get across that he didn’t want it cut off.

“OH no, Mr. Lewy! We’re not going to cut you! Now let go so I can put this tube in.” Daddy reluctantly let go. “Alright Mr. Lewy, here we go, you’re going to feel some…”

“OOOOooooooOOOO!!!”

“Oh, got a swollen prostate, don’t you?.... Ah, there it is…Alright Mr. Lewy, I’m done.”

Well that should stop the pee problem. At least I know he won’t be lying in it all night when I’m not here….I like this nurse.

The pump on Daddy’s feet started beeping. It continued to beep. 20 minutes later, it’s still beeping. In comes the charge nurse….Again excuses why no one came to fix the machine. She stopped the beep, at least long enough for her to get out of the room and it started again.
This cycle repeated 3 times before she finally went and got a wound care nurse to see what the problem was.

It seems his feet were not doing what they should, excess drainage was on the bed, and the hoses were crimped. The wound nurse jumped in there and removed the sponges that were not supposed to be changed until Monday….cleaned out his feet, redid the suction, and was out. She really seemed to be on the ball. No nonsense from her.

While she was doing that, a tech came in and gave Daddy a bath, removed the soiled linens and replaced them. The charge nurse just stood there and watched. She really acted like she didn’t know what to do.

Pearose came by to see Daddy. Thank you. I know he did recognize you. He’s a dirty old man remember? Young pretty blonde, yep, he remembered.

Daddy is sleeping now. He got another morphine shot about 20 minutes ago. So I’m finishing up this post, and headed to meet a friend for dinner and the basketball game.

2 comments:

pearose said...
I have to add this, Pauline, because the story will help others know your Dad's humor even when its a tough time. While visiting yesterday, an ultrasound specialist came in with her machine and we soon saw Lewy's interior on the monitor.

Pauline - "Is it a boy or a girl?"
Laughter....

Ultrasound specialist - "It's both - one of each."
Laughter....

pearose - "Lewy, your inside is as pretty as your outside."

Lewy (without missing a beat) - "My outside has always been my worst side."
Lots of laughter....

Humility is my favorite character trait in people. It just doesn't get better than that!

Just for a second, I could see the young man that had just witnessed the atrocities of World War II, run up to the pretty woman sitting on the bench for a Kiss and the beginning of the rest of his life. He swept your Mom off her feet with the charm of a man that can see the beauty beyond all the ugly that life can sometimes offer. That is a gift.

Lewy has lived an amazing life in many ways and his dedication to his country through the darkest times of a World War that should never be repeated or forgotten. Thank you Lewy, for your service to this country.

One of his greatest rewards is having a daughter and son-in-law like you, Pauline and Hubbie. He is truly blessed.

I listened to the last few minutes of the game last night and hope the celebratory dinner was as good as the ending score. Way to go Vols! Sorry Vandy fans...(snicker). It was a different story a couple of weeks ago.

Stella said...
I can't go to sleep without sending best wishes for Mr Lewy. Yes, you need to walk a tight line as how much you can scold the folks who don't do their job and still prod them into taking care of your dad. Keep their attention but try to keep them happy. Regular staff should be on now that the week end is finished. You will need to start over again with new nurses in charge. May God be with you and Hubbie as you advocate for Mr Lewy.

You Learn Something New Every Day

2008-03-08T23:34:00.000-06:00

It’s Saturday and we are in the deepest snow in many years. It’s still coming down. Very pretty, but unlike our perfect southern snow storms, this one has covered the roads.

With Daddy in the hospital, I don’t see any possibility of me getting there to see him today, unless someone with a snow mobile comes by to carry me to town. In a way, it’s a relief. Its too bad to get out, so I don’t have to feel guilty, but I’m not so sure Daddy will understand…..Trying to call him on the phone is pointless. He couldn’t reach it, much less hear well enough to communicate.

I guess I must consider today a vacation day, one where I can get into Daddy’s room and bathroom and attempt to sterilize them both.

Late yesterday, at the hospital, the wound nurse came in to unwrap the bandages from the surgery. Both heels looked like someone had taken an ice cream scoop to them. The right side was deeper; say a 1 ½” scoop, where the left was more like a small melon baller.

There was raw red meat showing with patches of puss scattered about. The nurse squirted the open holes with some fluid that looked like water, patted them dry.

Being curious that I am; I had to watch the entire procedure. Next she cut a close-cell sponge into a bowl shape about twice the size of the scooped out holes and pressed the sponges into the holes. Then came this clear film that was sticky on the skin side. She pressed it down to where except for wrinkles, it appeared more like glossy skin. Several criss- crosses of the clear tape went on to hold the sponges in tightly.

Next she took a small knife and punched a hole through the tape in the center of the sponge area. This was so she could place an air tube, very much like aquarium tubing, into the hole. It had a circular sticky pad attached to it that she pressed down to the sponge assembly. Then the tubing was hooked up to a small pump. I might be mis-remembering, but I think she said the suction pressure was only equivalent to an atmospheric pressure of 1. When she turned on the pump it took about 20 seconds or so to suck all the air out of the sponge and tighten the tape down around the wound. Basically a vacuum seal bag. This will put enough suction on the wound to pull all the nasties out and help begin to bring fresh blood into the area.

I asked her about the smell; that by the way; was no longer there. She confirmed that my understanding from the doctors’ reactions was correct. That is the tell tale sign that if you are caring for someone with bed sores or any other wound, and you smell that rancid meat smell…don’t wait. Get it tended to immediately.

If this could have caused Daddy to need his feet amputated, isn’t the conclusion that if this were on his butt, or another place that cannot be amputated, that it could have been fatal if I had waited for the regular doctor’s appointment? Perhaps all us of us caregivers should make a list of the things we’ve learned and post them..... (Here is fine with me) of things to watch out for.

I’ve never had any medical training, and never lived with anyone that did; assuming at least some osmosis of information would occur… I find it rather disturbing that a tiny bit of ignorance can have such an enormous impact.

Please, if you learned something that the rest of us need to know, let’s share. I’m going to be telling our home health nurse who is young and obviously unaware of this, she needs to pay attention to that smell, and not wait to flag it to the more highly trained staff.

Anyway, I’m sad I’m not going to see Daddy today, unless the sun comes out and the roads clear up.

Hubbie and I have talked about how strange it is to not have him here. It has been so many years since we were alone in the house together, it kinda feels like we’ve sneaked off somewhere to escape our chaperone. Weird.

Thanks to all of you who sent well wishes for Daddy. In no small part, I see this blog as being a way to not have Daddy suffer my mother’s fate, or one I have an irrational fear over.

That is - dying alone…..

When momma died, all of her fiends were in Florida, she was in Tennessee. There was no one here to say good bye to her.

I don’t want Daddy to slip away so quietly with no family or friends to miss him, or even to remember him. Unfortunately, I think it happens all too often. A person outlives their friends, ends up in a strange place, and has no social interaction. When they go, there is no one to call, no one to come over, no one to say good bye.

6 comments:

hassana said...
Hi Pauline, Hi Hubbie ,
I wrote a note to you this morning, it seems it did not go through for some reason... Anyway just wanted to say that I'm full of admiration for what you've been doing to Lewy. I'm very pleased to hear that the surgery went well and that his bed sores were not hopeless after all.. I wish him a very speedy recovery from the hospital so he can go back to his usual environment. Have been regularly reading yr journal for the last 2 months,and I wish you all the strength, patience and faith, in providing Lewy with the best possible care, you are doing great...It is so tough, I know...and I don't think anyone can really understand what you're going through unless they actually live with Lewy. My father, now 71, has had LBD for the last 10yrs (initially diagnosed with Parkinson's for the first 3yrs then Lewy came along for the following 7 yrs). Anyway lots of similarities with yr Lewy: FBI, winning the lottery, the toilet problems, the mumbling, the bed sores, the stubbornness, etc. Although he has had a very loyal and genuine daytime nurse for the past 8 yrs, My Mom has also been taking care of him all along, giving him all the necessary love, attention and care, and of course she has to bear all the non-stop daily incidents that you've been experiencing...and much much more (I'm also sure that you've been experiencing much more than what you actually write...)
I live with my parents and I help as much as I can....I know it's never enough...it's so heartbreaking to see one's father's state regress...I try to give him as much love and quality time as possible, and I try to give Mom a lot of moral support. She sure needs it!.
My prayers are with both of you and Lewy..I really do admire you.

Hubbie said...
Thank you for your kind words Hassana. Our best to you and your parents.
I am happy to report that the roads did clear up around noon and Pauline has gone to sit with her Dad. It appears the roads are drying so she may even be able to go to the game tonight. The Lady Vols are playing Vanderbilt in the SEC tourny. Pearose just called and she is going to visit Lewy. She might even accompany Pauline to the game.
I've got pork chops marinating and ready to grill when Pauline gets home. If the Great Spagetti Monster is feeling saucy, we'll be cellibrating a Vols victory and Lewy getting better.
All in all not a bad day; not bad at all. Isn't it funny how fast the world can turn.

Thank you all for your thoughts and prayers for Lewy.

Hubbie

oldfriend said...
(((hugs))) and keep pressing on to get the knowledge out. It is a needful thing.

Go Vols!

Always prayers for each of you.

pearose said...
I did visit with Pauline and Lewy for a couple of hours. I still see the twinkle in Lewy's eyes, but I guess most guys would have that twinkle with 5 women making a fuss over him (3 nurses and us). He still has his humor, too. It was really good to see him.

Stella said...
I did not abandon you. I've been here. Freddie has required a great deal of time and effort and Saturday is the day for one of my daughters to come get a list of my household supplies and go to the gro. store and drug store for me. We also had a local election...someone needed to replace our new Gov. Jindal. Dau#2 stayed with Freddie while I went and did my civic duty.

Oh, do I feel guilty??!! Man!!! In your writings, you talk about the heels. Now I know about a sore on the feet because Freddie has diabetes. With someone who has diabetes, you see a place that won't heal, you jump and run...but you have not mentioned Lewy having diabetes so I tried to brush it out of my mind...it nagged at me, but who am I to cross these miles and suggest emergency. Now I can just say I should have questioned it. Oh do we ever have hindsight?

I would think you played basketball in high school. I can just picture you on the court with Daddy [as he was then] in the stands, rooting for his little girl.

Imagine going to a game to unwind after tending to Lewy and having Hubbie waiting with dinner for you?

Rest well tonight as you prepare for the next chapter in caring for Lewy, whatever that may be.

Pauline said...
Yes, Stella, I played HS Basketball. Sorry to hear your having a tough time right now, I weas wondering about you.

No, Daddy doesn't have diabetes. Surely, everyone would have been more watchful. Fortunately there is not much wrong with Pappy except the LBD.

Thanks to everyone for the kind comments, and to you pearose for coming by.

I Thought I Saw You Laughing

2008-03-07T23:31:00.001-06:00

I got Daddy up early this morning to bathe, dress, and feed him breakfast. He had a doctor’s appointment in the early afternoon with a surgeon to see what needed to be done about the pressure sores on his heels. We went to my doctor appointment Tuesday, so I took the opportunity to have our GP look at Daddy’s feet. I had pointed out the rancid smell of the sores to the home health nurse, but she didn’t seem that worried.

Our doctor got down on his knees and removed the bandages on daddy’s feet, examined them, cleaned the sores, and applied new bandages. He never called for the nurse to assist.

As soon as he saw the right foot and smelled that smell, he determined that Daddy needed to see a surgeon about cutting out the dead meat in his feet. The nurse set up the appointment for Thursday. I’m thinking it’s a good thing I brought him along rather than having someone stay at home with him. That was just dumb luck.

Surgery? This doesn’t sound too good. They said it might be an in office procedure. In and out. No big deal.

Well good, maybe it will be like the nurse said, they go in cut out the big black disc of dead meat, then the wound would heal up reasonably quick.

The surgeon came in and got down on his knees, with the nurse assisting, and removed the bandages from Daddy’s feet. He immediately jumped back…

”Yes, I smell it. That’s dead meat. We will have to do surgery tomorrow morning.” He directed the nurse to begin the process of admitting Daddy to the hospital. In tonight, surgery tomorrow, not expected to be released before Monday.

Then the bomb dropped.

The doctor told us that from the feel of it, the bruise is very deep. However deep it is must be cut out. If it involves the bone, then there is a possibility that the leg must be amputated.

I just about fell through the floor! I don’t think Lewy caught it……..I sure hope not.

The doctor continued….”If this were left to go another month, there would be no doubt he would loose the leg. It’s good that he’s here.” I’m thinking about what a fluke it was that we had not waited for the previously scheduled appointment a month from now.

I’m astounded really, that it could be this bad, and the home health nurse not recognize it. We had discussed the smell. Everything the doctors said backed up everything she had said about the wounds, except the smell thing. She must not know what that smell means. We’ve been noticing it for 2 weeks now. I don’t fault her. I believe she just has not been presented with this basic and necessary information.

It wasn’t long before the surgeon’s nurse escorted us to Daddy’s hospital room. As much as I don’t care for the for-profit healthcare system and all that political crap, I have to admit the facility is top notch. The staff is too.

As the Charge Nurse checked Daddy in, he asked all the usual questions…family history? Surgeries? Alcohol? Then he smiled…any recreational drugs?

Daddy responded…”I smoked a marijuana cigarette about 30 years ago.” The nurse was laughing his ass off. Daddy continued…”I didn’t see that it did anything for me.”……

OK, I’m sorry, I could not help it then, I can’t help it now. This is another famous Daddy story.

In the late 1970’s Momma and Daddy retired to Florida and lived in one of those retirement trailer park communities near Naples. I never knew where he got it, but as the story goes, it was supposed to be some really good sh**…………Really good sh**.

Anyway, Daddy got hold of a couple of joints and stashed them out in the laundry room for over a year before he decided one day to give it a try. He told Momma he was going out to the laundry room to do whatever with his tools. He figured Momma wouldn’t come out looking if she had no reason to look. Good logic…Daddy went outside to piddle about with his tools in the laundry room and fired up one of those bad boys. He says he smoked the whole thing all by himself.

From Momma’s side of the story, he probably did.

Its odd that “it didn’t do anything for me” is what Daddy says. Because according to Momma, about 30 minutes after he went outside, she decided to go ask him something. When she found him, he was sitting on his stool in the laundry, giggling.

Of course Momma had to know what was so funny. Daddy just sat there and giggled. She said he tried to talk but got his tongue all tangled up and then would start “laughing like a hyena” (That was her favorite line).

My Mom was a mathematical genius. It didn’t take her long to eliminate the possibilities of what could be causing this odd behavior.

Ballistic would be a mild description of how her reaction went. The more she fussed about it the harder he would laugh. This of course, pissed Momma off even more. This of course was even funnier to Daddy.

Needless to say Hell was paid for his sin. But in the long run, it became one of Momma’s favorite stories, and whenever she would tell it, Daddy would always just sit and giggle.

Hubbie here.

Pauline is trying to end on a high note (pun intended) I have heard the story before and it is funny as hell…………and it is true……………..but as you rightly assume from the front part of her post some things are afoot at the Circle K;…………………things that may not be so good

Lewy/Daddy is in the hospital tonight. He is having surgery tomorrow. They will remove the dead tissue from the soars on his feet.

They may remove his feet.

Stay tuned.

4 comments:

Stella said...
May the Lord be with you, your dad, and Hubbie as you try to get rest tonight. It sounds like the medical staff really cares for your dad and I'm sure they will do everything possible to send him back home to you in as good a condition as they are able. Please know there are many prayers for you and your family.

Rose said...
I have been meaning to thank you for your daily postings. They have really helped to alleviate the loneliness of our similar situation. I feel as if I've come to know your family, and I was floored to hear about this latest issue. My thoughts are with you along with my prayers for a good outcome and a quick recovery for your father.

Hubbie said...
Thank you for your concern and your prayers. There is some good news. Lewy is out of surgery and they did not have to amputate. He will be in the hospital at least a few more days, probably on some very good pain killers. Wow, Lewy on drugs; the nurses have no idea what they are in for. I'm sure Pauline will give you the full story tomorrow.

pearose said...
Things can change on a dime, apparently! I'm glad there was no need for amputation. I can't imagine the additional pressure the two of you would be under if that had to happen. You are all in my thoughts. I hope Lewy likes the drugs!

Please Just let me Sleep….

2008-03-06T23:30:00.000-06:00

Lewy says he slept better last night than he has in a long time. That’s great, because he made damn sure we didn’t. He has taken to calling out for us (not by our names but other people’s names, like former girlfriends…) every time he wakes up. He opens his eyes sees no one there and starts hollering.

Normally his voice is so weak you can barely make out what he says, but by golly if its 2 AM he can raise the roof.

“June……… June! ……….. JUNE!!!” (The old girlfriend’s name)

I stagger out of the bed. I’ve been asleep about 1 hour, and I’m not happy about being woken up. I’ve always had insomnia issues, so I REALLY do not like being rudely awakened. I make my way into the living room where Lewy now sleeps in his recliner.

“What do want Daddy?”

“Where is everybody?”

“Asleep!” I start to head back to bed.

“Where do you want me to go?” I turn around and head back to Lewy.

“I want you to go to sleep. Quit hollering. We have to get some sleep too.” I turn and head back for the bed…..Oh good; Lila got my on my spot and kept it warm. “Move Lila…good girl.” I crawl in get the covers pulled up, shut my eyes and try to blank out all the internal dialogue in my head….I’m drifting off…….

“June………. June! ………….. JUNE!”

Aw damn it. Please just let me sleep. I stay still, hoping he will give up and go back to sleep. I’m so tired, I ‘m sure…I…can…go…back……to…..sleep….

JUNE! …….. JUNE!!.......... JUNE!!!

Crap! I got up from the bed and went into see what was the matter. “What is it Daddy?” (You should detect a noticeable whine in my irritated voice) “What do you want this time?”

“What time is it?”

“It’s 3 AM!” Daddy, Please, Please let me go back to bed and get some sleep. OK?” I wait for an answer….”OK Daddy? Are you going to sleep now?” He started snoring. Good I turned around, rooted Lila off my spot and got back in bed….Hubbie reached over and patted me gently on the butt. That’s the after being married 31 years, a little “I’m sorry” pat…..Sympathy always helps.

The bed is so soft and warm, the fans are both buzzing, the dogs and cat are sleeping, oh yes…I’m …….just…about…asleep………….

Ding.

Ding ding.

Ding.

Huh? What is that?

Ding.

Ding.

DING!....What on earth? It sounds like metal against GLASS! My glass table top!!….I jump up run in the Living Room to see what he’s doing.

Lewy is lying there next to the side table with his copper cane whacking the table top. I grabbed it out of his hand. “What ARE YOU Doing!?!”

“Nothing”.

“You’re whacking the table with your cane.” I snarled as I tossed the cane over to the couch, way out of Lewy’s reach. “Daddy you MUST stop this. I have to sleep. I CANNOT stay up all night every night and work during the day. You’re killing me here. Can’t you JUST STOP!?!”

“Huh?”

“What do you want?”

“Nothing.” ………. I’m standing there, fist clichéd, my jaw tightening up, with that urge to strangle again……….Perhaps I should try to talk to him. Explain to him that if this continues, I will have no choice but to put him in a nursing home…

“Daddy. Daddy”….He’s asleep again.

Oh please, please just sleep….

And sleep he did until about noon when he woke up and was thrilled with his very restful night. The best night he’s had in a long time.

Wonderful! I’m soooo glad……

Shaken Parent Syndrome

2008-03-05T13:38:00.000-06:00

I’ve always said if I were a parent, I’d be in jail for child abuse. After today I think that’s probably true. No I didn’t hurt or abuse Lewy; I just wanted to. I wanted to take him by the throat and just shake him. Death by Shaken Parent Syndrome. I suppose it’s possible.

Today Lewy was in full bloom. I had an appointment with our family GP. Lewy cannot be left alone, so where I go, Lewy goes.

After being sunny and in the 70’s on Sunday, today was a raw low 30’s rainy day with winds straight out the northwest at 15+ mph. Brutal weather.

I got ready, and woke Lewy up, got him in the wheel chair to wheel him out to the car. When we got to the threshold at our front door the wheel chair stopped because the threshold is too high for the chair to roll over. I asked Lewy to lean back so I could press down on the handles to raise the front wheels. Lewy leans forward. I asked him again, and pulled him back into the chair. Just as I was trying to leverage the wheels, Lewy leaned forward.

Now all this time, the front door is standing wide open. Having been raised by my tight wad of a dad, I knew that the worst possible thing you can do is leave the door standing open. How many thousand times has Daddy yelled at me for that? Yelled before I had even gotten the door open enough to walk through it.

“Please Daddy, lean backwards”.

“You need to be shuttin’ that door.”

“I can’t because you won’t lean backwards!”

“Why do you always want to fight with me?”

“I don’t!” I pulled him backwards and pushed down before he could react by leaning forward. Finally, over that d*** threshold. Now out to the car that has been warming up. The porch goes of course, straight out, then there is about a 2 inch drop where the sidewalk has sunk where it meets the porch. Then it takes a step run up something approximating a 5% slope. Now if you don’t live around a bunch of hills like we do…a 5% slope on the interstate gets truck lanes and lower speed limits, and warning signs.

The front wheel of the wheelchair went off the edge. Lewy flung forward like a wet dishrag being slung across the room. I had to grab and retract to prevent him from flopping out head first.

Lewy’s wheelchair has the foot rests removed so we can get around the house better and Lewy is normally very good about picking up his feet. But now the chair was tilted forward straddling the drop off at the side walk, and Lewy had his feet firmly planted on the ground. I tried to push the chair forward up the sidewalk. It would not budge. I tried again; it tipped forward but would not roll. I checked for the problem and discovered Lewy’s planted feet.

“Pick up your feet”……no response….”Come on Daddy pick up your feet, its freezing out here.”

“What’s that over there? Is that your keys?”

“What? Where? (I should know better)…He’s looking at the drive way, there’s not a thing there. “Come on Daddy lift up your feet, I’m freezing.” He just would not do it. “OK, let’s walk.” I go and help him stand up and gingerly walk him up the sidewalk. This is slow and tedious. At best 3 inches for a pair of steps. “Come on Pappy, let’s go its freezing.”

Daddy takes a few steps and stops. “Where are the dogs?’

“In the house. Come on!” “Don’t worry about other stuff, just walk…” He takes a few steps, and stops…

“Look at all those nickels! Are those my nickels?”

There aren’t any nickels Daddy…that’s gravel. Come on don’t stop.” He takes a few more steps, and stops.

“Which car are we going in?”

“THIS ONE!” Don’t stop, come on Daddy its freezing out here!”

We finally make it to the car door. I open it and start to help Lewy sit down. He starts fiddling with the door handle. “Come on Daddy, let go of that.” I say as I try to wrestle the knob from his vise grip. “Come on Daddy get in the car”. He starts turning to go in head first. “No Daddy, you’re going in the wrong way. Put your butt in the seat first.”

“That’s what I’m doing.”

“No its not. Turn your butt around over there… Come on - turn….Please Daddy would you please just turn and sit?”

“I am” he insisted as he was reaching for something in mid air that I couldn’t see. “We’ve got to move these straps out of the way.”

“Come on Daddy just get in the damn car, would you, please!?”

“Have you got the heat turned on?”

“Yes, Daddy the car is warmed up. Would you please just… get… in?” He can’t walk and talk at the same time. It’s just too much for Lewy to deal with. After much more ado, Lewy finally gets in the car.

“Do you have enough gas?”

“Yes, I have enough gas.” This has been an old sore rub with me from years ago; he is a nut case over letting the gas gage go below ½ tank. Drives me crazy…..Its ¾ full for Christ’s sake! He is working my last nerve. Lewy talks all the way into town but its garbled nonsense. Fine. I don’t have to pay attention…..After 30 minutes of pure dementia talking we arrived at the massive oversized conglomerate corporate hospital where our doctor had to move his office, because they bought out the local not for profit (wonderful place) hospital down the road, and shut it down. They didn’t want any competition. So now instead of a nice calm setting with easy parking and a Care-Van to ride you to and from the building, we have a 60 acre parking lot that is poorly laid out so traffic patterns are not only ridiculous but somewhat dangerous. There are no parking spaces to be found, no Care Van, the Valet Lot is full, it’s raining, and I get pissed off every time I have to go to this corporate monstrosity.

“Ain’t you ever gonna park?” I’m thinking I might hit him now. We drive around in circles. Nothing. Now we are in the vulture crowd circling for reverse musical parking spaces. Around and around.

AH HA! A space! And a good one near the front at that…..Then the reverse process of getting Lewy out of the car begins. By the time I get him out and in the wheelchair, 1 hour and 25 minutes have elapsed from the time I started ushering him out the front door. 30 minutes of driving; 55 minutes trying to get Lewy in and out of the car. I’m freezing, it’s starting to hail.

Upon leaving the doctor’s office, I’m wheeling Lewy down the long corridor to the elevators. He’s dragging his feet. “Pick up your feet Daddy” He doesn’t. “Pick up your feet Daddy” He doesn’t.

I finally shove him down to elevators when he picks up his feet. Great the last 3 yards was not a struggle. Then he starts yelling at the elevators. “ARE YOU GOING DOWN?”

“Daddy, hush, quit talking to the elevators.’

“WELL? WHICH WAY ARE YOU GOING?”

“Shush, you’re making a lot of racket.” The elevator arrives; oh good it’s empty. I turn around and back in so we are facing the door. Lewy instantly reaches up and starts pushing buttons. “No NO STOP!!” …. too late….And here is the 4th floor, and the 3rd floor, and yes of course the 2nd floor also. He didn’t push the Lobby button….

We arrive at the Lobby and I wheel him out. It’s raining, the wind is howling. They picked the highest hill in the county to build this monster. There really should be wind turbines up here. I raced to the car with Lewy in tow. Then the process starts all over again. After 15 minutes of begging Lewy to get up and get in the car, and him stopping every 10 seconds to inquire about a billion different things;…………..I’m ready to grab him by the throat and just shake him!!!

JUST GET IN THE DAMN CAR WOULD YOU PLEASE!!!!

It would be different if he could not actually do what I’m asking. It’s Lewy. Lewy won’t focus. I’m freezing my butt off. I gave Daddy my really warm coat….I’m standing in the rain in my Hoody.

I can understand how someone can get to that point of frustration that becomes overwhelming to where you lash out and do something you ordinarily would not consider. Its scary, to think I might could actually flip out one day and whack him.

I know it sounds so silly, but for me at least, this is pretty damn hard to deal with. His every waking minute is involved in intense physical care of feeding, bathing, dressing. Everything NOW! NOW! NOW! NOW!

It’s exhausting.

1 comments:

3rd Wife said...
It's not silly, and it IS hard. You are doing things that most people couldn't, or WOULDN'T, do. Since I am a parent, I understand the frustration. But at least when you're dealing with kids you know that they eventually grow up.

You have my utmost respect for what you're doing, Pauline.

Payback

2008-03-04T13:29:00.001-06:00

As Pauline noted in the blog header yesterday, the post today is my version on the day’s events on Saturday. She looked over my shoulder Sunday and saw what you are about to read. Laughing she patted my shoulder and said, “I just wrote about that.” We both laughed knowing that both versions had to be posted. I did not read her post until I finished mine. I went back and made one small edit in the conversation I had written upon her return. No other words were harmed in the editing of this post.
So without further adieu

Hubbie here. I was a bad boy yesterday.

And it worked!!

Yeeeeehhhaaaaa!!!!!!

As all three regular readers know, Lewy is currently sleeping in his recliner until the sores on his feet heal. We are planning to get an institutional sleeping chair so that the sores don’t come back. Also maybe with a motor to help get him out of the chair. Funny how little stuff like that makes you feel guilty. Why is that? I mean we, meaning Pauline, works hard to keep Lewy at home and in our particular plane of existence. Why should we feel bad for thinking it is hard work and we would rather not do it? Sleeping in a chair is not that uncomfortable is it? Why do we feel like we are cheating him out of his bed? Why? Because we are human beings; that’s why. You can blame whoever you want, God, Mother Nature, Ka, Phi, Zeus, or the Giant Spaghetti Monster. It don’t matter. That’s just the way it is (© Bruce Hornsby).

So today is Saturday. I slept till 8:00. MMMmmmmmmmmmmmmm.. Pauline had showered and was ready to walk the dogs when I got up. I made coffee, poured myself a cup and………….you know……....did all that morning stuff. Pauline had a date with a girl friend so she was dressed and out the door by 10:30. I dressed and breakfasted on leftover ground beef quiche. (It was quite good and easy to make. Let me know if you want the recipe.) Then I cleaned up the kitchen. At no time during these activities did either Pauline or I make any attempt to be quiet. Despite the noise Lewy slept on. This is unusual because Lewy, like most 84 year olds, tends to wake up as soon as it is not dark outside. That way they can breakfast and be ready for their morning nap by 9 AM.

Around 10:20 it dawned on me that Lewy was still asleep and Pauline was about to leave. When Lewy woke he would need to be cleaned and changed. Since he had been asleep for about 14 hours now there was likely to be a significant amount of cleaning. The parts that would need cleaning were parts that I would prefer not to associate with. He may have dipped them in cold water in the past but by now the boys were no doubt fully coated in elder pee; probably worse.

“Pauline, shouldn’t we get your Daddy up before you leave?”

“I have to go now.”

“Can’t you be a little late?”

“No dear.” She kisses me and is out the door.

“Oh bother.” (© Pooh )

10:30 AM. Lewy was sleeping soundly and snoring loudly. I retired to the office to work on my music collection. I have several Radio Hubbie collections that need cover art. The music was playing but not too loud. There was a b-ball game on TV but not too loud. I knew what I’d have to do when Lewy woke but I saw no reason to force it to happen.

12:30 and Lewy was still snoring away. I made myself some lunch and considered waking Lewy to see if he was hungry. I did not consider that option for long. You see, I had to walk by Lewy sleeping in his chair to get to the kitchen. He had an aura about him but this particular aura was not detectable by my eyes. It was an olfactory aura. As I passed his chair, my brain confirmed that I would not be singing “Happy Happy Joy Joy” (© Ren and Stimpy) when Lewy awoke.

1:30. Lewy was still sawing big ol’ logs. I began to think…………………….. Pauline was having lunch. That should be over by now. I’m thinking I might just get out of this.

2:30. Lewy was sleeping but not so soundly now. The TV’s on mute. I’m using the headphones for the music. I’m not a total ass. I have the headphones pulled off of one ear in case Lewy calls………………Or the phone rings……………. Or the smoke alarm goes off…………..Or someone pulls up in the driveway….… I have to stop all of those things in a hurry lest they wake Lewy. No sign of Pauline. She did say something about walking around the park. But still………..

3:00. Damn! Where is that woman? She must have gone to the grocery. I began to calculate times in my head. An hour for lunch; maybe an hour and a half; maybe a short walk. She must be at the grocery. Damn!

3:30. Lewy just stirred but he didn’t open his eyes. I’m wearing two pairs of socks to make sure my feet make no noise when I walk. I have spoken to the dogs about their behavior; basically the deal was “You bark, You die!” Tweak understood. Lila just tried to lick my face.

3:45. Where the hell is that woman?! She knows what’s waiting inside those pants! Lewy is sleeping but doing so very lightly. I’ve put the cat outside. I am moving only when absolutely necessary. By now it must have soaked into the recliner. I really don’t want to have the impending experience. I feel a bit bad knowing that if I get my wish, then Pauline will have to do the nasty. (© Emilio Estevez)

3:53. The dogs are barking. They are running to the door! It’s her!!! I MADE IT!!!! (Insert evil laugh.)

3:54 “Let me help you with those my dear. Oh, by the way, your father is still asleep.”
“……………..”

”No he has been asleep since you left.”

“……………..”

”Yeah, that’s about 18 hours.

”…..”

”Yes that is unusual.”

“…………………..…..”

”Don’t worry. I’ll take care of the groceries.”

I carried groceries from the car to the kitchen with a smile on my face. I knew I might have to clean the chair but I also knew I wouldn’t have to clean the boys. I really was sorry Pauline that had to do it; just not that sorry. I mean, at least she is related to the boys by blood. When I said “I do” all those years ago, I wasn’t counting them as part of the deal. In fact I can very honestly say that up until the last couple of years, I had not thought of them at all.

So Pauline cleaned up her Dad. And yes it was a bad as you think.

Pauline went out again that evening to party with some high school classmates. Lewy and I watched some TV. He napped some more. I made a nice orange/pineapple/honey/chicken dish for supper. I felt like I owed Lewy something. Pauline came home. We chatted. She got Lewy ready for the night. We slept.

Guess what.

It turns out that even at 84, if you sleep eighteen hours in a row, you tend to wake up a bit early the next morning. In this case 3:47 in the morning. And guess what. Lewy had to pee. Since it was now 3:51 in the morning my initial response was, “OK. Have at it. That’s what the diapers are for.” It seems that when awaked at 3:47 AM I’m an asshole for, at least, the first 5 or 10 minutes. Who knew?

So I got Lewy up to go pee. He headed to the bathroom. I headed to the couch.

From the bathroom I heard, “You know where the clean drawers are?”

I got up and went to Lewy.

“Why?”

”These are wet.”

”Well then why the he…………………………..OK……………….You go pee and I’ll find the clean ones.”

I got the pee scissors and cut Lewy’s underpants off and he shuffled to the commode. (The proper term is “watercloset”, but Pauline tells me most of you don’t know that. I tell her that all three readers are architects or work for one. She gives me that look. I remember that I have been married for 30+ years, at least in part, because I know not to point out that I am correct. It’s been 30 years. She should know that by now.)

Where were we?

Oh yeah. Lewy peed and we changed his underpants. We also changed his outerpants. It seemed that someone had peed on them too. And for those of you who, like me, never gave it much thought before, let me point something out. You know those nasty boys (© Janet Jackson) I managed to avoid yesterday? Well here I was at 4:30 in the morning bending over in front of Lewy to pull on his pants, under and outer in one swoop. That reduced the amount of time the view lasted but could not prevent the fact that I was eyeball to nut ball with the boys.

At least they were clean. Well sort of. At least cleaner than they were before.

4:37 AM. Lewy is changed and dry. The cat has come in to watch the show and is now curled up on the couch. I grab Lewy’s blanket and cover him as he reclines.

“You need anything else?”

Lewy puts out his hand. I take his hand. He shakes my hand.

“Thank you.”

“My pleasure Daddy. You holler if you need anything.”

“OK.”

5:53 AM. And from the room of the recliners and the couch I hear, “MMm,..GG……Pauline?.......ugh…..pulene………..?” But again Pulene didn’t wake up. I did. I crawled out of bed and found my bathrobe and went to Lewy.

“What’s up?”

“She said we had to be ready to go in 20 minutes and that was a half hour ago.”

“Who did?”

“She did.”

“You must have been dreaming. I’m going back to bed.”

“So what time do we leave for the doctor?”

”It’s Sunday. You are not going to the doctor.”

“I’m not?”

“No. Go back to sleep now. I’m going back to bed.”

“OK.”

So I crawled back in bed as the sunlight starts to beam though our bedroom window. The light shone over my face but that is not what kept me awake. It was that damn song. “Do your boys hang low? Do they waggle to and fro?.................”. Finally the sunlight moved on, the dogs settled down and I drifted off to sleep. I dreamed that I could see inside Lewy. Inside I could see Daddy slapping his knee and smiling at me.

“Payback’s a bitch, ain’t it?”

2 comments:

pearose said...
I was actually looking forward to reading this post, given it's advance 'teaser' yesterday. With the emphasis on 'looking', since all three of your readers (doubt it!) are in the design business, please know that we get the picture - we're very visual. So, neither of you are truly alone when becoming more acquainted...LOL.

Hey Hubbie,
Given that Lewy reached out to you to Thank You, do you think it is possible that he stayed in his recliner on Saturday to wait on Pauline, too? He may have remembered your earlier conversation with him years ago when you kept talking about those ball bearings....

3rd Wife said...

ah, sweet karma...
ok Hubbie...I take back the things I said about you yesterday..

Proctology Anyone?

2008-03-02T13:27:00.000-06:00

Yesterday, being Saturday, I was allowed to get out of the house for a few hours. I had made arrangements with a friend across town to meet for lunch and to hang out for a while.

By the time 10:30 rolled around and it was time for me to leave, Lewy was still asleep in the recliner. Hubbie and I both was a bit puzzled by this, but not worried. It was a normal Lewy sleep, except for the not waking up in the morning part.

I had thought about waking Lewy and changing his pants but 1) I really didn’t want to do it, 2) I hated to wake him, and most importantly 3) I hoped that Hubbie might do it after I left to meet my friend. I managed successfully, and quickly, to rationalize not waking up Lewy.

It was a lovely day to get out and drive around. I met my friend; we ate lettuce wraps at P.F. Chang’s then did a driving tour of all the construction sites in town. Unfortunately I had to get back to my duties of going to the pharmacy for Lewy and the grocery store.

By the time I got back home it was about 4PM. Hubbie greeted me at the door along with the two dogs, Tweak aka Fuzzy Butt and Lila a pure bred mutt. We brought in the groceries, and Lewy was in his recliner sound asleep.

Hubbie, (bless him for letting me out) informed me that Daddy had been sleeping all day. He woke up just before I had arrived but had not gotten up at all. This is not good. It meant that objective # 3 had been totally and completely unsuccessful.

“He hasn’t been changed? (Oh hope against hope)

“Nope. You probably ought to go sniff, I think he is pretty wet.”

I approached Lewy in his recliner. He was snoring rather peaceful……gasp! Oh the smell. I think I have developed a keen sense of smell as it relates to pee. My fear is that those olfactory nerves have been permanently switched from say roses, or grilled steak, to pee. Do we have pee smellers or whatever they are called like we have selective taste buds?

But I digress. There was no excuse this time, I had to get Lewy up and get him cleaned up. I have 45 minutes before I am to leave yet again to meet friends from my high school graduating class, for an evening out. (You know you are old when your Saturday night evening out starts at 5:30). But I’m re-digressing.

“Daddy, Daddy, wake up.” ….He opened one eye…”Daddy I need to get you up so you can go pee.”

“I don’t need to go pee.”…..Yes, I’d have to agree…he probably would not need to pee, but the warm pee vapor wafting up from around had to go.

“Come on, let’s get up and get you cleaned up.” That confused Lewy. I should remember – no compound sentences….”Lets get up.” So with much effort I got Lewy standing holding onto the walker. I had to call Hubbie over to act as a spotter. The pee pad and towels Lewy were lying on had to be removed NOW. I pulled those up disposed of the pad and ran into the laundry room with the towels….Yeah! The washer was empty, thank you to the great pee gods in the sky…

Lewy still had not made a step toward the bathroom. So I took his walker and picked it up like he should and moved it about 6 inches. Lewy moved 6 inches. We repeated this procedure until we made it into the bath room.

Lewy was soaked. His sweatshirt was wet all the way up to his shoulder blades, and I mean wet, not damp. His pants were just hanging from the weight of the pee.

I took a deep breath and reached to grab the pants….oh *&^%#*& they are wet and warm…I’m going to Ralph right here. But I hung in there and got the pants and the diapers pulled down. When I cut the diapers off and went to carry them to the pail, they dripped. I had never had these super absorbents drip before…oh crap it’s all over the floor, a nice drip line from the bathroom to the diaper pail in the bedroom. Gross.

I must say though that grabbing his sweat pants that were drenched and having to wrestle them off his feet over his bandages, was indeed truly disgusting. It was bad enough to have to do one, but then there is that damn other leg to do. Come on Daddy, pick up your foot, please come on pick it up….please just pick it up...”

And the thought flashed through my head….again I’m here with my head under Lewy’s bare butt. This is getting to be a bad habit.

Now for the sweat shirt. There’s just no easy way to remove a soaked shirt with out rubbing the pee part all over the top of Lewy’s head. I got the shirt and the pants and ran to the washer with them, then straight to the sink to scrub my hands and arms.

After much coaxing I got Lewy to sit on the toilet so I could give him a good soapy sponge bath. Scrub Scrub rinse rinse. All nice and clean. “OK stand up.” Ummm Lewy had dropped a few dumplings. Lewy started reaching for the toilet paper (YEAH!!) and he carefully took off 1 sheet, and then tore it in half to use to wipe his butt. He reached around with this half sheet and stuck in it the right spot, and removed an empty hand. He took the empty hand and delivered the missing toilet paper to the trash can. (Long ago Lewy forgot that TP can be flushed, he puts all the toxic waste in a can now.).

There’s no choice, I have to go in. I got on my gloves, and went for the baby wipes. The first one; a good smear and the missing TP. Then the second one…Perhaps you recall me writing about the arm diameter turds Lewy has…but if not, I’m going to remind you…My dear friend, Niffer that cared for both her aging parents assured me that when you get old your butt muscles relax and you let loose these incredibly huge turds.

However, today we weren’t dealing with turds so much as the relaxed butt muscles. Did you know that when you wipe that relaxed anal opening that….uh…well…its kinda open….so unfortunately if you applying any pressure you find your finger up in there. OMG! My finger is in my Dads butt! Now I am going to be sick. The worst part is when you retrieve the wipe; you realize you have to go back again, and again, and again, and again…

OH THE HELL WITH THIS…. IT AIN’T EVER GONNA GET CLEAN!

1 comments:
Anonymous said... God bless you .

Living with Lewy Body ebook

TABLE OF CONTENTS

Letters

Letters

Letters

Letters

Letters

Letters

Letters

Letters

Letters

Letters

Letters

Lewy’s Final Farewell

Squirrel Anyone?

Thank You

Lewy's Last Night

In Memoriam

Laugh at Every Opportunity

Counting Down

Counselor’s Call

Talk to Me...Somebody...Please

Letters

Lewy Comes out of the Closet

Saturday Morning with Lewy

Rollin' and Tumblin'

How Slow am I?

No Summer Today

My Life with Bill Clinton

Hard Morning

Getting it Done

Stage Seven Blues

TGIF

Ectoplasmic Residue

You are Just A....

It's Just A Hard Way to Go

Kick Some Butt

Hope You Approve, Momma

Lewy and The Blog

Timeline

A Hard Day's Night

Knight in Shining Armor

Fecal Salute

So Lewy and I Slept Together Again

Making the Final Arrangements

Money Can't Buy Me Love

Living and Dying in 3/4 Time

Daddy's Still Got Game

Condition Update

1.2 Pictures

Life Line

The Last Stages of Life

Nurse Goodbody

Grieving In Reverse

A Christmas Story

Rotel Tomatoes

Stages of LBD and Lewy Update

Before The Fall

Last Kiss

New Fixture- a poem for Lewy

The Great Lava Flow

When I Die, I May Not Go to Heaven

Lewy, Hang On

Bring it On

Candy Apple Red

Hospice

DISCHARGED!!!

Monday Hospital Update

The Secret Life of Ethel Merman

Saturday Hospital Update

You Learn Something New Every Day

I Thought I Saw You Laughing

Please Just let me Sleep….

Shaken Parent Syndrome

Payback

Proctology Anyone?